Osteopetrosis.Org's Visitors Book

dr.qinan

from http://www.osteopetrosis.org/
  Hi, I never new there were so many people that went through the same thing i did! I lost my daughter Aleisha to infantile osteopetrosis 8 years ago. She was only 5 months old. She wasn't diagnosed at birth. She looked like a perfectly normal newborn baby girl. On new years day 2001, i took her to the hospital. They took a x-ray of her because they thought she had a chest infection. 2 wks later she was diagnosed with infantile osteopetrosis @ 3 & 1/2 months. I was only 19 yrs old when i got told my 1st born had this disorder i have never heard of. It was a terrible heart breaking time 4 us.. I felt helpless as i watched my baby girl slowly die. She had a tube down her nose to feed her and they must of used every vain they could to take blood and all sorts. in the end they ended up putting a drip on her scalp!! The only cure 4 her was a bone marrow transplant. So we waited to see if anyone in the world donor list was a match. Me and her father unfortunatly wasn't. During this time, her left side of her face went paralized but she didn't go deaf or blind. They found 6 people that could of been her match, but 3 of them wasn't a match enough. Just as we were going to find out if the other 3 were, my precious little girl stopped breathing. They resussitated her and she was put on a life support machine, and transfered to Great Ormond St Childrens Hospital. Within a few hours she passed away. This was the worst day of my life. She died in my arms. It took my hours to let them take her! Everyday till the funeral, i went to the hospital to be with her. I still cry to this day!! Now everytime i fall pregnant, I have to get a CVS test done to see if my unborn child has osteopetrosis. Since Aleisha, I have had 2 more beautiful girls thanks to the CVS tests.One is 6 years and the other is 7 months. But in between these two, I had to have a termination because the CVS test came back possitive and my unborn baby had osteopetrosis. I was 4 and 1/2 months pregnant!! This was the hardest thing i ever had to do. It took me 2 hours to take the tablet!!!! I just wish i never have to do it again, but i couldn't bring another baby into this world knowing it will suffer like Aleisha did. He is a boy. So i lost 2 babies to osteopetrosis and i'm still grieving. Its just something i know i will never get over. My 2 healthy girls are the only ones that keep me strong. I love them both and thank the lord I have them. I got told the goverment don't fund rare genetic disorders because they r so rare. This isn't fair!!! I think they should. I'm so glad i found this site. I been wanting to share my feelings about this for years. Thanks for listening Sonia XXXX
Sonia <chalise02@hotmail.com>
london, uk
- Saturday, March 21, 2009 at 20:30:28 (EDT)    i am 27 with osteopetrosis. does anyone have any ideas of specialists in the uk as i wanted to see if there any alternative therapies that help with relieving this pain or giving me more information on this as i just seem to be having more and more scans and blood tests. thanks
ana <ana@littlebirdblue.co.uk>
cardiff, wales, uk
- Tuesday, February 17, 2009 at 18:13:47 (EST)    wondering if anyone out there has either given birth to someone with osteopetrosis naturally or if anyone who has osteopetrosis has given birth naturally without complications. please advise. thanks!
vina lillvis <burgybrown@yahoo.com>
new york, ny usa
- Friday, January 16, 2009 at 22:01:11 (EST)    Hi everyone my name is Bronwyn, Boy could I have done with this site just under 20years ago when my second son Dylan was 3weeks old & we were told he had osteopetrosis so would be deaf & blind by one & die by two at 24 you go what the hell!!! When Dylan was 6mths we were off to Aussie that was hard we knew no-one & were miles away from home they did test after test operations after operations finialy the bone morrow transplant in August 1990 the next few weeks were rough more operations 3 stokes but with a great out come we returned home to New Zealand in the Ocboter unfortunately only for Dylan to die a week later on the 5/11/90 at just under 11months. Then 18mths later on the 20/8/91 a give birth to a beauitfuly girl at only 32weeks by c-section the doctors knowing about Dylan come to see me say everything looks fine no poblems that too was very short lived as Phil Western from Waikato hospital walked into my room saying can Glenn (my now ex-husband) be up here soon I just looked at him & said you lying ****** unfortunately I knew she had it the minute I saw the photo the new born unit had given me the day she was born. Natasha never had a transplant & pasted away at only 4&;a half months the one good thing was she spent most of her short life at home unlike her poor wee brother Dylan. I've remarried since then & now have 5 very beauitful children Daryl 22yrs, Dylan & Natasha big brother, Renee 14, Blair 12, Chloe 9, Tegan 7. Even thou my ex & I carry this disease I was always scared while carring my other children & so many people say to me oh well atleast you have them but it by no means replaces the children you have lost they are always in your heart & on your mind. What they would look like now the sound of their voice they were my chidren I loved them deeply & always will, their maybe gone but will never be forgotten. Hope this helps someone else out there. Take care
Bronwyn Saywell <bronmark@slingshot.co.nz>
Te Aroha, New Zealand
- Saturday, November 22, 2008 at 05:55:10 (EST)    Hi I am 18 and I have had many fractures over the last seven or so years, with many of them not healing for long periods of time. I haven't been diagnosed with osteopetrosis, but some doctors are looking into it. Are there any tests that I should ask about? Any info is well appreciated.
Jillian <jillian.harvey1@maine.edu>
Bangor, ME USA
- Saturday, November 15, 2008 at 14:44:32 (EST)    Hello just wondering if anyone has experience of or advice on chronic foot pain. I have OP and related osteoarthritis - no current fractures in foot bones but constant pain for 3 years, limiting my walking. Running out of ideas on what to try next ... Thanks!
Nell <neggles65@yahoo.com.au>
Australia
- Thursday, October 09, 2008 at 06:29:00 (EDT)    In honor and memory of Andrew, a patient of Dr. Key's at Bowman Gray. It has taken me many years to come to terms with Andrew's loss and I was delighted to find this site. He was a bright, cheerful presence for seven years. I plan to have a blog about Andrew in the months to come.
Marjie Gowdy <marjie01@gmail.com>
Callaway, VA USA
- Friday, October 03, 2008 at 14:20:51 (EDT)    I had never heard of this disease but was looking at the web site of one of my favorite artists, Laurel Burch, and she had this condition. She was a vibrant, creative soul and I encourage you to look at her website www.laurelburch.com. Wonderful website. Thank you!
Patti <plaid106@hotmail.com>
Sacramento, CA USA
- Saturday, September 27, 2008 at 08:49:47 (EDT)    I was glad to find this site. My daughter Alisha was diagnosed with this condition at birth. She will be celebrating her 18 birthday in August. She has the the CA2 type of this condition. All her life we have look for some hope of improving the condition. We did spend time in ST. Louis and she got the once over from the doctor there. We are up to 18 broken bones. She has broken her femur again this year and now have spent some 4 months dealing with that. She would tell me right now to shut up and ask all of you about your lives. She could talk the ears off an elephant. She is still walking but now she has two limps. She is a little behind the curve as far as her mental skills but she catches up fast. The only reason I mention this is because she can't read very well. If you write her either the computer will have to read it or good old mom and dad will have to read it to her. Our biggest fear as parents is how do we leave her alone. The last leg broke on a missed step getting off a bus. She wants a job but at this point we just cant take the risk of leaving her without supervision. She always has a smile on her face.I am sure she would be happy to correspond with anybody. Did I mention she loves to talk.
Frank d <frankdeleon@frankscomputershop.com>
KS USA
- Monday, July 28, 2008 at 15:18:53 (EDT)    I just found some paperwork from 1979 saying my husband has ADO but he has never had any problems. I am going to get my 3 month old son tested ASAP. Any advice on what type of testing I should ask for? I am so fearful that he may have this and it may be worst than his dad's.
Wendy <kay.wendy@gmail.com>
issaquah, wa USA
- Sunday, June 15, 2008 at 02:03:59 (EDT)    Our son Dawson was diagnosed with the infantile/malignant form of Osteopetrosis at 6 months of age. We were lucky that it was diagnosed from an enlarged spleen and he did not have any other problems at that time. He was admitted to the hospital for a bone marrow transplant on 12/17/2007. He did very well, but then developed a pneumonia and died on 1/22/2008 at 9 months of age. While this is still very fresh and painful, I want to share this with parents who may have just had children diagnosed. A bone marrow transplant is currently the only cure. Dr. Paul Orchard at Univ. of Minnesota and Dr. L. Lyndon Key at Med Univ of South Carolina are 2 experts in the USA. They were both very helpful in speaking with my oncologist about the treatment plan and I would encourage you to have your oncologist speak with one or both of them. The second thing that I would mention is that there are genetic tests now available that can confirm the diagnosis in approximately 70% of cases. This can be obtained through Connective Tissue Gene Test lab (www.CTGT.net). They are also good at working with your doctor to facilitate testing. I hope that this information is useful to those looking for answers.
Matt Shuford <shuford@urologyclinics.com>

- Friday, February 08, 2008 at 13:56:37 (EST)    The International Osteopetrosis Association held it's 1st Annual Halloween Gala on Friday, October 26 in Fisher, IN. Our family attended the event and the support at this event was tremendous. The monies raised will be used to support research for the dominant form of osteoPETrosis. You can visit their website at www.internationalosteopetrosisassociation.org. Also, if anyone would like to join, we have Osteonews - a yahoo group. Both forms of the disease are discussed on this list. The list has suffered tremendously over the years with losses BUT I feel that it is imperative to share information with one another. Such as doctors who we each have used and had success with in our treatment of the disease, problems/treatments, etc. We need to share our information to help find the cure for this disease.
Lori Davis <ldavi29@columbus.rr.com>
Nashport, OH USA
- Saturday, October 27, 2007 at 20:02:16 (EDT)    i am a 30 yr old father of a now 3 yr old child diagnosed with (miop) at the age of 1.5 months. my son Nathanyel, was blind at this time. our B.M.T. doctors told us to expect to take Nathanyel's body home by the time he was 4 mths of age. well, Nathanyel had an unrelated cord blood transfusion on december 23 2004, Nathanyel is now 3 yrs of age. he is still fighting strong..Nathanyel has suffered many difficulties on his long journey of a fight. he has suffered over 23 blood infections that should have easily taken his life, brain surgery for craniosystosis, and severe g.v.h.d-(graft versus host disease). that is not to mention all of the other difficulties he has had along the way. so you parents who run into this hard obstacle there is hope. all is not lost.. we did not baby Nathanyel like alot of these other parents tend to do. i as a father felt it my duty to show my son that he was just like a normal child with a lil harder fight than most. Nathanyel has learned that this is his fight, and that we are only here to support him in this fight. this may sound cruel to alot of you other parents out there, but our children need to know that life is there battle and we as parents are only here to support them and raise them and guide them thru these treacherous battles. some children have harder battles than most...that's where we as parents come in. so all you other parents, don't give up. there is hope for our children fighting this tough battle.
d. sanchez <fatsochubbycheeks@msn.com>
grand junction, co USA
- Saturday, October 13, 2007 at 07:22:06 (EDT)    Hi my name is Andrey, Me and my wife have two children. My younger son was born last October, and was diagnosed with Osteopetrosis at six months. He looked normal, but didn't gain enough weight and had problem breathing during common colds, because of narrow nasal passages. He also had enlarged liver and spleen. His sister who is almost one year older than him and healthy was HLA-identical bone marrow donor. So we had the BMT. There were a lot of complications, but his new marrow ingrafted and things were going for better. But sadly last week he suffered a massive brain bleed and died three days later. I will try to include his whole story in the &quoteople" section. He went through a lot, but it still didn't work for him. If any body has any questions I will be happy to answer them. Andrey.
Andrey Kukhotskiy <russkiy20@hotmail.com>
Lynnwood, WA USA
- Tuesday, September 18, 2007 at 03:09:36 (EDT)    The website for the International Osteopetrosis Association is http://www.internationalosteopetrosisassociation.org. Lori
Mark, Lori & Kaleb Davis <ldavi29@columbus.rr.com>
Nashport, OH USA
- Sunday, September 09, 2007 at 22:55:54 (EDT)    Hi all! We have a very strong family history of the dominant form of Osteopetrosis. My 11 year old son Kaleb is currently in a wheelchair due to his hips being near collapse due to the bone disease. I wanted to share 2 items with the guestbook that I thought might be of help to others with Osteopetrosis. There is a newly formed organization (that was described by Beth Miller on the guestbook back in December). It is the International Osteopetrosis Association and it's goal is to help fund research for the dominant form of Osteopetrosis. Also, we have a Yahoo Group created (Osteonews) that are for those affected by Osteopetrosis. To join, go to Yahoo Groups and search for Osteonews. We would LOVE to have members with both forms to share information with others. It is a wonderful group that has undergone numerous loses through the years so at times we are very quiet...but for sufferers of this disease, it can be such a God send. Blessings to each and every one of you with the bone disease. I have seen very up close and personal how it can adversely affect your life and I pray for a cure each and every day. Lori
Mark, Lori & Kaleb Davis <ldavi29@columbus.rr.com>
Nashport, OH USA
- Sunday, September 09, 2007 at 22:51:55 (EDT)    I just want to say I have talk to a couple of people who reached me through this web site. I am always happy to talk about my transplant and what I went through Please contact me if you wish. I know a lot about the transplant process. I have even consulted with some patients for my doctor.
Dave Isle <Go2daveisle@aol.com>
Minneapolis, mn USA
- Wednesday, July 18, 2007 at 21:32:52 (EDT)    I have had osteopetrosis all my life and had to deal with numerous broken bones over the past thirty years. I have tried to make sure that this disease hasn't consumed my every day living abilities, however sometimes it's been really tough. I try not to complain about all the pain that comes with broken bones that are stubborn and sometimes just don't want to heal, but somedays when I wake up in the mornings this disease seems to get a hold of me and its all I think about. I like to read different stories of people that know what I am going threw and understand how it feels. Even though I have a wonderful family that help me so much, sometimes I feel that I'm asking to much of them with all the help I need. I'm a very independant person and it is so hard for me to ask for others to help me with the simplest tasks when I have broken bone, that I try to forge threw the pain and do it myself instead of asking. It's hard to explain to some people about this disease and what it feels like, that sometimes I try and forget how hard it really is to have it. I guess that so many people take for granted how nice it is just to get up and walk around not having to worry if they step just right, that they may break a bone for no real good reason. I don't like to complain about it and I know that I can handle it, but one day it would be nice to have some one come up with the miracle cure that helps all affected by this disease. I feel that I have a very full life and am grateful for all I have but sometimes I find myself with more and more broken bones wishing I could get up and do the things others do. I have always had a very good orthopaedic doctor that I have seen for years. I've been fortunate enough that he really listens to me when I tell him what I think is going on, in spite of emergency rooms and others that don't know enough about the disease and just tell me I am fine, nothings shows up on the xrays or tests and sends me home. I have went to The University of Iowa Hospital and now been going back and forth to Mayo Clinic in Rochester,MN to see if there is any more that can be done for me. Unfortunalty I keep getting the same answers there is really not alot of options. I guess in my mind I know that this is the case but a little part of me hopes that someone will say something that will give me a better choice. I am happier that now I have a much better understanding of this disease. It has been very helpful for me and my family to have doctors sit down and talk more about it and actually send you home more literature than I've ever seen. I still do most everything that I want to do and I feel happy knowing that. Lately I have so many broken bones in a short time that everything seems to be getting worse. I just hope the bones will heal up, they always have in the past, even though it takes such along time. I am always happy to talk to others and really enjoy reading this website and finding out as much info as possible so if anyone wants to get a hold of me please feel free. Thanks for reading as let you in on a little bit of my life!
Tamara Wheeler
Oakville, IA USA
- Friday, June 29, 2007 at 17:21:58 (EDT)    I have had osteopetrosis all my life and have had many broken bones. I have lots of pain with this disase and lots of hurdles in my life that I try to go threw as gracefully as I can. I try to do everything as normal as I can so this doesn't consume my whole life, but honestly some days that is not an easy task for me or I'm sure my family. I have a wonderful support system with my family which makes my life so much easier, but I know that all their help has to weigh on them heavily too. I try not to think about the pain that I feel and keep busy doing other things that I love. I'm glad that other people with this disease do the same, I love to read stories that I can relate to, because its hard to tell other people about how your feeling about it without feeling like your complaining all the time. For the most part I just have to deal with lots of broken bones, pain , and arthritis with this, I feel fortunate that I can still see and hear. I hope someday in my lifetime that they will come up with some miracle cure so others will not be affected, but in the mean time I just deal with the things that happen with it one day at a time, as frustrating sometimes as that may be.
Tamara Wheeler
Oakville, IA USA
- Friday, June 29, 2007 at 10:08:45 (EDT)    How many are out there with this disease whatever type Would be good to get lot's of you in contact with each other. We are a family's run support trust for anyone to get in touch. We all have dealings with this disease and many have lost close friends and relatives. Would be good to get an idea how many. Anyone with ideas please get in touch.
Alison Gould <alison@osteopetrosis.co.uk>
United Kingdom
- Monday, May 28, 2007 at 17:52:45 (EDT)    When I was born I was diagnosed with Malignant infantile osteopetrosis. When I sixth months old I was given a bone marrow transplant from an unrelated donor. I am now 16 and in college. The only lasting effect of the osteopetrosis is that I am partially sighted and rather short for my age. I am living proof that people can be cured of the symptoms this terrible disease. However, I still ahve the disease because you cannot get rid of it completely and it is likely that if I ever have children of my own, that they will also have osteopetrosis.
Philippa Swettenham <phil_010@hotmail.com>
Manchester, UK
- Thursday, April 19, 2007 at 08:26:58 (EDT)    Here we have found a case in Hong Kong, which is a two months old baby. The web site made by the perents as follow http://fongheiman.bravehost.com/ and the blog as well http://fongheiman.bravejournal.com/
cheng wai yin <214059@sinatown.com>
shatin, hong kong
- Thursday, March 29, 2007 at 21:13:07 (EDT)    Also our web site address is Osteopetrosis.co.uk this is at present being up dated so some areas are set up but left blank.
Alison Gould <skullybear@tiscali.co.uk>
Taunton, Somerset United Kingdom
- Friday, February 16, 2007 at 06:27:13 (EST)    I have just looked at your links section and you have our old contact details on there Mrs Margaret Wright this needs to be changed please to Mrs Alison Gould 26 Doniford Road Williton Taunton Somerset UK TA4 4SE email; skullybear@tiscali.co.uk Tel;01984 639416 Please contact me for further details if needed Thankyou Ali
Alison Gould <skullybear@tiscali.co.uk>
Taunton, Somerset United Kingdom
- Friday, February 16, 2007 at 06:24:09 (EST)    My daughter is 8 months old and was just diagnosed with malignant Osteopetrosis. Along with this she has a visual impairment most likley secondary to this and the hydrocephalus, for which she has already undergone surgery to place a vp shunt. We are awaiting news on a match for a bone marrow transplant. She is doing really great and is happy to be home after spending a week in the hospital. All I really want to pass on to parents and other caregivers is, you are your childs biggest advocate, keep on being presistant about their healthcare. It does not matter that doctor's may have more education than you, you probably know your child the best! Keep it loud eventually someone will listen...
Athena <fortigerlilly@yahoo.com>
St. Louis, Mo USA
- Sunday, January 21, 2007 at 19:23:59 (EST)    I am 26 yrs old and I have scoliosis. I was wondering if there is any relationship between scoliosis and osteoperosis. Basically am I at any risk for osteoperosis because I have scoliosis?
Kristi Rossignol <dkrossignol@netzero.net>
Weeks Mills, ME USA
- Tuesday, January 16, 2007 at 14:24:10 (EST)    Please update your website to reflect the current address and contact number for Dr.Sohail Shayfer. He has not worked with the Orthopaedic Consultants Group for 5 years and many patients are confused as this website is the first link on a Google search of his name. His office address and number are: 16030 Ventura Blvd. #100 Encino, CA 91436 (818) 981-3688 Thank you
Melissa <MTabibian@aol.com>
Encino, CA USA
- Friday, January 12, 2007 at 12:03:00 (EST)    I am 35 years old. I was told I have osteopetrosis when I was 17 years. I have broken my leg long bones 4 times. I did play college basketball. I live a wonderful life right now. I have had very much luck with my legs and joints by lifting weights and doing certain cardio. I do have a little joint pain but not much. I wish everybody a great joyful life and remember to not lie down, get up and beat this. Much love.
Chris Morgan <chrisfitman@yahoo.com>
omaha, ne USA
- Friday, January 12, 2007 at 01:23:40 (EST)    Hi everybody! I broke my right and left femur 3 years ago, and had pins and metal plates placed in the femoral head and long bone area. Now I developed osteopetrosis related osteoarthritis of my right hip, pain is so bad that I need surgery (hip resurfacing/replacement). Does anyone know anybody having similar condition as me? I'm really confused since no doctor seems to be certain about the outcome of my particular surgery. Advice on which doctor has experience with osteopetrosis hip replacement would be great. Thank you so much in advance!
Allen Lee <siaohunglee@yahoo.com>
South San Francisco, CA USA
- Friday, December 29, 2006 at 15:57:11 (EST)    I'm a 31 year old male dentist with mild form of osteopetrosis, history of various fractures, and now severe osteoarthritis of right hip
Allen Lee <siaohunglee@yahoo.com>
South San Francisco , CA USA
- Friday, December 29, 2006 at 15:39:11 (EST)    I have Osteopetrosis but my bone Specialist never really specified which Type. I'm am 25 years old with 2 children. They have not been tested for this disorder yet
Constance Riedel <mtekmomma@yahoo.com>
Findlay, OH USA
- Date not recorded    I posted on this guestbook over six years ago. My name is Beth Miller. My grandmother, mother, aunt, sister, and two sons have been afflicted with autosomal dominant osteopetrosis. By necessity, I have become a self taught expert on the condition. I have no signs of the disease, but I am a carrier. Myself, all three of my children, and my sister are involved in research studies at IU Med. I personally have some great news to share, I am helping to set up an International Osteopetrosis Association (IOA). This association will be a not for profit association. The IOA plans to fund research, attract the general public's notice, and connect families suffering from the physical and emotional effects of osteopetrosis. I will need your help, if we can combine our resources, we can make a difference towards finding good treatments and possibly a cure. My offices will be in Carmel, IN. (Carmel is fifteen minutes north of Indianapolis, IN.) My office building is not complete, so I will not been moving in until mid-February, but the association is gearing up to start business very soon. Currently we are working on the IOA website. (We have reserved Osteopetrosisresearch.org) There is some great current research going on at IU Med. I will be working on linking the IOA to all the latest research from around the globe. Stay tune, and please email me and let me know you are out there.
Beth Miller <beth.miller12@sbcglobal.net>
Indianapolis, IN USA
- Thursday, December 07, 2006 at 23:09:25 (EST)    The Guestbook has been revived after weathering so many storms. One question from us: Would it be better as a blog? If you tried to enter in the past few months and it wasn't working: Please try again.
Patrick Birdsall
USA
- Thursday, November 16, 2006 at 12:40:08 (EST)    I WAS DIAGNOSED WITH OSTEOPETROSIS IN 1983 WHEN I WAS 13 YEARS OLD. THEY TOLD ME THAT I HAD THE "ADULT" ONSET OF THE DISEASE. I AM NOW 36 YEARS OLD AND AM NOW IN THE PROCESS OF HEALING AGAIN AFTER ANOTHER BREAK. I HAVE BROKEN MANY, MANY BONES AND HAVE HAD QUITE A FEW SURGERIES, WITH OSTEOMYELITIS AS A SIDE EFFECT. I IRONICALLY WORK FOR A HOSPITAL AND HAVE A GREAT ORTHOPEDIC SURGEON. I AM ALSO IN THE PROCESS OF LEARNING TO ACTUALLY DEAL WITH THE DISEASE MENTALLY. I HAVE HAD IT FOR SO LONG THAT YOU GET USED TO THINGS AND I LEARNED HOW TO SUPRESS MY REAL FEELINGS WELL. SO NOW I AM IN A "GRIEVING" PROCESS OF LITERALLY DEALING WITH THINGS FOR THE FIRST TIME, AS I HAVE SUPRESSED THEM ALL OF THESE YEARS. IT IS AN INTERESTING JOURNEY. SOME GOOD DAYS, SOME NOT SO GOOD DAYS. PEOPLE HAVE TOLD ME THAT I AM A STRONG WOMAN, BUT I THINK IT IS THAT YOU HAVE TWO WAYS OF LOOKING AT THINGS...POSITIVELY OR NEGATIVELY. I STRIVE FOR IT TO HAVE A POSITIVE SPIN. I AM A SPIRITUAL PERSON AND HAVE ALWAYS FELT THAT IT WAS GOD'S WAY OF SLOWING ME DOWN TO REFOCUS ON WHAT IS TRULY IMPORTANT. I HAVE A LONG WAY TO GO WITH THE JOURNEY OF REALIZATION, BUT I AM STRONG AND WITH GOD'S WILL, BE ABLE TO LEARN TO COPE AND NOT SUPRESS SO MUCH. IN SOMEWAY'S I FEEL THERE IS A REASON THAT I HAVE THIS, I MAY NEVER KNOW WHAT IT IS....BUT THAT'S OK. MY FAVORITE MOTTO IS A QUOTE FROM MATTHEW MCCONAUGHEY....JKLIVIN....(JUST KEEP LIVIN) MAY GOD BLESS YOU ALL IN YOUR JOURNEY THROUGH THIS LIFE WE CALL OUR OWN. IF YOU HAVE ANY QUESTIONS PLEASE FEEL FREE TO EMAIL ME. I DON'T KNOW IF I CAN HELP BUT SURE WILL TRY. jklivin_1970@yahoo.com
STEPHANIE OSBORNE <jklivin_1970@yahoo.com>
BRIGHTON, MI USA
- Thursday, September 14, 2006 at 17:30:28 (EDT)    Hi. My 5 month old niece has just been diagnosed with sever malignant osteopetrosis and has lost her sight due to cranial pressure. We are very unaware of this disease but we've been told that symptoms of this degree at this very young age could lead to a short life expectancy. Our family is devastated and we would appreciate it if anyone had any information that would be helpful to us at this time. Thanks.
Laura Barnes <lkbenigma@yahoo.ca>
Corner Brook, Canada
- Saturday, July 29, 2006 at 10:57:55 (EDT)    Please read previous post.... Sadly at 02.52 am Jonny lost his fight for life, he will no longer be in pain and no more suffering. He has now turned into a beautiful angel along with his uncle Pete. Take care all and sweet memories xx
Aunty Tel
K-in-A, Notts UK
- Tuesday, July 18, 2006 at 07:30:19 (EDT)    I have had 2 children with malignant infantile osteopetrosis my daughter died at 9mths after BMT my son was born 2mths later also with OST had BMT at 7wks old and is now 10years old. He is the 1st child here in uk to survive a donor Bmt, he has some health issues. I am also secretary for osteopetrosis support trust now as i have been involved with it for so long but there isn't many of us out there would be pleased to hear from others or help if we can. Kind thoughts with all those undergoing any form of treatment for this disease keep your chin up and hold onto hope.
Ali Gould <skullybear@tiscali.co.uk>
united kingdom
- Friday, May 19, 2006 at 08:27:11 (EDT)    Hi there, Just to let you all know how Jonny is doing.... Jonny has been in and out of hospital since i last wrote until now, with low platelet counts, so every other day he has been having his top ups of platelets and Immunoglobulim. The Dr's decided it would be a good idea to take Jonny's spleen out. So Monday the 15th May 2006 he had a splenectomy. He has spent 2 days in ICU and was put on the ward late last night. Ive spoken to my sister this morning and she told me that Jonny's platelets had gone up over 200, which is very good for Jonny, but when i spoke to her tonight she said that they had gone down into the 100's. So its just like a waiting game to find out if the splenectomy was a good thing or bad! We will find out in the next couple of days. I'll keep you posted, but please wish us luck, Thank you. Love and well wishes to all those Osteopetrosis (A horrible and cruel disease) patients out there. xxxxxxxx
Aunty Tel <rubmaley22@tiscali.co.uk>
USA
- Wednesday, May 17, 2006 at 18:02:11 (EDT)    i have been suffering from the mild form of oesteopetrosis also called Intermediate Oesteopetrosis and i have constant fractures... the disease runs in my family as my great grandfather, maternal uncle and aunt and now me suffer from the same disorder...this is a wonderful website and i have actually gained alot from this site...Keep It Coming!
Mary <umairjqureshi@yahoo.com>
Pakistan
- Sunday, April 23, 2006 at 17:41:22 (EDT)    Hi Everyone. It has been awhile since my daughter, Makayla, passed away almost 5 years ago. I still have so many unaswered questions. My daughter had an unknown form of OP, never seen before by the experts. If anyone has an undiagnosed form of this terrible illness, especially with RTA, but NO CAII deficiency, please email me. We had alot of brain malformations and seizures as well as kidney and liver involvement. My daughter could not walk or talk or sit up unassisted nor stand. They said she was in an infantile state, although I believe she was cognitively aware of many things that a three year old child can understand. I know she went through alot of pain and was a very sweet and beautiful child with a wonderful spirit. I also know she is singing with the angels now. This is the second fatal illness for my husband (unrelated illnesses) and we have one more with another terrible illness called Fanconi's Anemia. Please keep us in your prayers and if your child or you suffer anything close to what Makayla went through, please contact me. I'd like to hear your story.
Lesley Poe <lesleyapoe@msn.com>
Carthage, MO USA
- Friday, April 14, 2006 at 23:14:08 (EDT)    Hi there, Hope alls well to everyone. Just an update on how Jonny is doing.... Jonny was aloud home on Friday 7th April, the Dr's are so pleased with his progress. We went to see him on Saturday, he looked great, he's put weight on and seems to have grown longer. On Sunday he started with a nose bleed which carried on through the night, so my sister phoned the hospital, they just said to keep an eye on him. But, on monday Jonny's mum decided to take him back to hospital. He needed Platelets and was aloud back home. His nose bleed still carried on during monday and also tuesday morning but had to go back to the hospital anyway to have a blood transfusion. I've just spoken to my sister, she has said he might have to stop in hospital and was waiting to see ear, nose and throat specialist. Can't wait until everything is better. x
Aunty Tel <rubmaley22@tiscali.co.uk>
Nottingham, UK
- Tuesday, April 11, 2006 at 12:48:56 (EDT)    hi!to everybody.i am 36 old and rigth now i am with broke leg 3month,it s my 2 accident in 4 years and i go very well.i have to 2kids 7old year and 3old ,both of them have osteopetrosis from me.i thank god because they dont had broke somethink.but my first son he have brompel with his eyes,he can see but with problems he ware glasses,the 2son he is more better with his eyes.they are very clever for them age and we try to live normal,we dont speek with him about his codition yet,we say to him only to take care in his games.i dont want he fraid his life from now .thank god i have one very special wife and she help me to mutch with my broke leg.she want another child ,but i am afraid to have another child with osteopetrosis.i dont now what its gonna happen and i am very afraid.for now every think its go fine but in the future nobody now only the god and thank to him i am fine from others codisions.this is my story.i want thank you for yor web site its very good ,before 20 years nobody now about osteopetrosis.and sorry for my poor english.good by to every one.
SOULIS <dela@in.gr>
athens, greece
- Tuesday, April 04, 2006 at 19:17:54 (EDT)    I wrote in November of 2001 about my infant daughter who was diagnosed with malignant osteopetrosis. We ended up going for the stem cell transplant with a 5 out of 6 HLA match. I am writing to encourage all of you out there. Never give up hope. Regardless of what the future holds, never give up hope. Ari is almost 4 years post transplant and doing very well. Though she is blind she is a normal, active 5 year old who has an extrordinary passion for life. Again thank you for this site and bless each and every one of you and yours. Celebrate life!
Janice Jordan <jjordan_pa@yahoo.com>
Plummer, ID USA
- Tuesday, April 04, 2006 at 06:37:47 (EDT)    Good website
mositech <mositech@mositech.net>
depok, Jawa Barat Indonesia
- Friday, March 31, 2006 at 08:06:50 (EST)    I have oesteopetrosis I was dignosed at birth and my older sister also had it she was dignosed at age 6 and she lived until age 32 when she lost her battle with the condition at The time of her passing she had a broken neck , humorous,pelvis was broken in 3 differrent places and more. I have recieved a Bone Marrow transplant as of Nov 2002 and it has worked out well for me. My older Brother was my donor. sadly there was no match for my sister. She was the one who was always looking for others with our problem and she never had any luck So now I am taking over where she can not
David Isle <Go2DaveIsle@aol.com>
Minneapolis, mn USA
- Wednesday, March 29, 2006 at 14:42:20 (EST)    Hi, Just want to thank you for this wonderful website. You're awesome! Faith
Faith (Brenna's Mom) <taurigirl@triad.rr.com>
NC USA
- Sunday, March 05, 2006 at 18:20:30 (EST)   -->  My sister gave birth to two beautiful baby boys, Cade and Jonny, back in September 2004. Something that she'd pined for for years (at this time they were living in Cape Town). Then in December 2004 she phoned and told me that Jonny was blind, shed been telling me that he was'nt following her around like the other one was. But what they didnt know that there was more pain yet to come... After that he had to have a V.P shunt fitted because the fluid wasnt draining around in his head, then he had to have a couple of hernia operations. It was then that they decided to move back to England to be around family. They'd only lived back here a month when there was even more bad news. Jonny was taken into hospital and a few months down the line after investigations Jonny was diagnosed with Osteopetrosis. The DR's told my sister that he has got to have a Bone Marrow Transplant for survival. So as i am this writing this letter Jonny is in Sheffield Hospital having Chemotherapy ready to start his BMT transplant at the weekend! As you can imagine they/we are going through so much heart ache. Osteopetrosis is such a rare disese, the Dr's have only ever performed this transplant around 100 times world wide so the DR's have told my sister. Thanks for reading, and any info i would be more than happy to receive. Thanks again xx
Aunty Tel <rubmaley22@tiscali.co.uk>
Nottingham, UK
- Tuesday, February 28, 2006 at 14:15:47 (EST)    I have 2 sons diagnosed with osteopetrosis.The doctors are not sure what kind it is.The boys already had lots of fractures.They have problems with their ears and their teeth.Hopefully that a cure can be found.
Ginette <ginettel70@hotmail.com>
Kent Bridge, ontario Canada
- Tuesday, February 21, 2006 at 08:18:42 (EST)    I'd like to thank the creator of this web site and also to say I am a 30 year old osteopetrosis patient who enjoys a full active life. I'm totally blind and attending a business administration course at a local college.
kerri <ruby75@telus.net>
Mission, Bc canada
- Thursday, February 09, 2006 at 00:35:39 (EST)    Hi once again, I have been on this web site before i have a son jacob with osteopetrosis he had four operation on his left hip the last one was last year in feb he is not doing to bad he still can't walk to far. He will be going into year 7 this year which is very nervous for me. he is a good kids he like warhammer because he cannot play sport that his hobbie and love it and has met some great friend there so if any one would love to write to us please do so jacob will be going on to 13 yrs of age.
faye pattinson <pattinsonoz@aol.com>
sydney, N.S.W. AUSTRALIA
- Tuesday, January 17, 2006 at 19:19:46 (EST)    I found out that my son, who turned 2 in late October, has infantile osteopetrosis. He fell in mid October, tripped over a rock, and broke his leg. Only then did we discover he has this genetic disorder. I believe prayers do work because I myself am recovering from Thrombotic Thrombocytopenic Purpura, which nearly killed me 2yrs ago when I gave birth to my son. Now we are questioning if what I have may have been a helper or cause as to what my son has. I am truly at a loss right now as to my son Payton's ordeal. I ask for all the prayers I can get for him and our family. I have struggled for my own life at one time, but it just devestates me to have to see my son struggle for his. Please, I need some support through this, if anyone out there will share the experiences and knowledge about this, I would greatly appreciate it. I need all the help I can get and all the prayers in the world. I in turn will pray for you and your families out there who have gone through what I am just now going through as well. May God Bless you all.
Amber Robinson <icequeen_8769@yahoo.com>
Hithchcock, OK USA
- Sunday, December 25, 2005 at 05:26:11 (EST)    Hi Thanks for a real good web site We are a familiy from Denmark that have a daughter diagnosed with the intermediaer Osteopetrosis, Savannah is now 6 years old and still have hear sight on one eye, the blindness on the other eye she was born with, her hearing is perfect. She is in need of a blodtransfusion every 3 weeks and have had this routine for years. to prevent the progression of the disease she is on at strict Calcium diet where she only is allowed half the amount of the recommended calcium pr. day 294 mg and combined with calcitriol the Active B3 vitamin and Gamma interferon injections 3 times a week, this seem to help very much, we have had x-rays taken every 3 months to see any changes and no where found. All this is stricly controlled by our doctor. We have at the same time been looking for an unrelated donor for 3 years and nothing really have come up, maybe because she is 1/4 from Greenland, so we are present in New York to do IVF/PGD with the HLA matching and have had 10 attemps so far, but we still believe that we will succeded in our attempt to save our Daughter, if any have questions or other good advice please feel free to write us. Best regards Jan, Malena and Savannah
Jan Larsen <larsen2002003@yahoo.dk>
Denmark
- Saturday, November 12, 2005 at 10:53:50 (EST)    Hi All, My daughter Brenna was diagnosed at 2 months of age with Malignant infantile osteopetrosis. I was wondering if anyone would be willing to share their experience of this disease with a mother who is currently experiencing much heartache about her daughter's diagnosis and treatment. My email is fclark@triad.rr.com. Any thoughts will be greatly appreciated. Thank you, Faith p.s. if you have any questions about my daughter's treatment I will be glad to share...we all have to stick together to fight this disease and create awareness
Faith Clark <fclark@triad.rr.com>
Liberty, NC USA
- Tuesday, November 08, 2005 at 20:25:24 (EST)    I was diagnosed when I was young and the phrase "Marble Bone Disease" haven't been in my vocabulary for many until only recently when I was involved in an accident. I am now considering having my condition looked at again because I know very little of it. I would be grateful for any guidance on local Australian specialists who may be interested in having a look at me. Take care. Rgds, -RS.
RS <rs.mail@optusnet.com.au>
ACT Australia
- Sunday, October 23, 2005 at 11:37:48 (EDT)    Hi! I'm was born with an Osteopetrosis disease and so was my dad. This site surely is helping understand my situation having such. thank you! God bless you!
Berna Lou Lopez <berna_lou@yahoo.com>
Los Angeles, Ca USA
- Saturday, October 22, 2005 at 04:18:44 (EDT)    Hi, I need your advise about how to access the article in the site. Our lovely daughter suffers OP, the moderate one. Blind, both eyes since birth, and also brain injured. She is 8 years old now. Currently, it seems that she has maxillary osteomylitis and we needs some readings on it. Thank you.
Sahat Panggabean <sahat@indocement.co.id>
Jakarta, DKI Indonesia
- Thursday, October 20, 2005 at 07:34:32 (EDT)    When I was 12 years old, I visited this site and left a comment about having osteopetrosis. Well, 4 years later I am still suffereing from pain, but I feel somewhat guilty for even comparing myself to some of these other people. I believe I suffer from the intermeidiate version of this disorder, althought no one is quite sure since very limited information is available, and since diagnosed, I have been pretty much a guinea pig with attemptive treatment. I noticed that there are other teens about my age posting on this website and I am more then willing to talk to any one sharing this diagnosis. Other then that, I am going to college next fall and am hoping that this year will be an improvement from the last. Thank you and be well!
Katie <dreambella47@hotmail.com>
Bethany, Ct USA
- Monday, August 22, 2005 at 02:52:37 (EDT)    I am 24 years old and was diagnosed with Osteopetrosis when I was little. I have sustained many fractures (hairline, stress, complete). Other than these fractures, I possess few signs of the condition except for being legally blind in one eye and having teeth deformities. Recently I fell and broke my femoral neck. This fracture seems to be rather stubborn in healing! Consequently, I have been in contact with a woman who has treated a child with the severe/infantile form of Osteopetrosis. She swears by drinking two servings of goat milk with 2 1/2 tablespoons of chocolate powder (without added Calcium) twice a day. Some of you may have been advised of this "treatment" but I thought I would post it in case it helps someone out there (I am NOT a doctor). I have personally been having this drink and have not seen any amazing beneficial results but that doesn't mean its not helping. If anyone would like to contact me, feel free to do so! I look forward to discussing what we can do to help ourselves!
Nisha <nishakg@hotmail.com>
Boothwyn, PA USA
- Monday, August 15, 2005 at 18:51:55 (EDT)    Was very glad to discover this website today. Was diagnosed with osteopetrosis in 1970. Only learned considerably more about it several years ago through a doctor at University of Indianapolis who was doing research. Unfortunately in the last 2 1/2 years have broken both femurs due to falls. Am still healing from the second break which occurred in Jan. Good news is the form I have seems to be mild. Look forward to hearing from other mature adults with osteopetrosis. Lived in OH until 2001.
Judy Murphy <jmurphy70@msn.com>
Phoenix, AZ USA
- Friday, August 12, 2005 at 18:49:35 (EDT)    My doctor is baffled with my xrays that show bone density in the tibia and lack of bone marrow in my right index finger. I have swelling in my right index finger, stiffness but no pain. Swelling in my right inner ankle but no pain. I have an appt to see a rhuemotoid doctor in a few weeks. I am concerned. I had to put a freeze at the gym until this gets resolved. I am not on medication other than 600mg motrin
Paula <PaulaPrecious@aol.com>
Spfld, MA USA
- Friday, July 29, 2005 at 10:44:06 (EDT)    Be blessed with the good and beauty of Life--------inspired by the late Max Griboff, MD and Joe Meinhofer, MD of Brookly, NY
Rev Dr Edwin Goldberg
NYC, NY USA
- Wednesday, July 06, 2005 at 20:46:06 (EDT)    Hello, my name is Chuck and I have Osteopetrosis. I was diagnosed at birth and wasn't supposed to live past 6 months. I guess I have the infant form but I am 18 now, going on 19. I am a freshman in college and living day by day. I have so many altercations, broken bones and i am fighting infection right now. I was in the hospital last year because I had brain surgery because of cysts that were on my brain. I have had so many breaks, i have lost count. I don't know what kind I have, I have almost all the symptoms, except blindness, deafness (i am deaf in one ear because of another disease), and strokes. Every year or month is different for me, sometimes i'll go years without breaking something but when i do, i really do. If there is someone out there my age (bit older or younger) please hollar out to me, I've met a few people with this disease, one died but one still lives but can't hardly stand up. The one that died was a little girl that was blind but she loved to sing. The person that has treated my since 6 is Dr. Key, I have gone up to Charleston, SC once a year every year. They run tests to see how my progression has gone. From what I have been raised, it took prayer to get me this far, my grandpa, who is a preacher, prayed, along with the rest of my family. As I know of, there is no history of OP in my family. I have 1 sister and shes perfectly fine. She has a bit of scoliosis or however you spell it, like me. I spend college days like any normal kid, studying, playing video games and I used to play golf, i was quite good until I had to stop, but i'll play again. Well I am glad i found this website. Like I said, if anybody my age is out there, email me.
Chuck <Red_crusader86@msn.com>
Bartow, Fl USA
- Friday, May 20, 2005 at 14:21:34 (EDT)    have been diagnosed with osteoperosis after bone density scans and many fractures.Have broken scafoid and wrist several times and now have constant pain and weakness....any idea on how to make stronger?
gilly goodenough <gilly.goodenough@nhs.net>
london, uk
- Friday, May 06, 2005 at 05:55:52 (EDT)    i have the gretatest respect for aLL OF YOU who have mebers of your family either sick or deceased as a result of sicknesses and i wish all good luke and i may soon be among you due to the facts that my brother has a need for bone morrow transplant, and is atually sick , no body of our family is compatible. take care all. eric
eric
USA
- Monday, April 18, 2005 at 00:43:14 (EDT)    <DIV class=comments>I visited your site with interest today. Our son died of osteopetrosis iat the age of 13 months in an annex of Great Ormond Street, England. At the time he was diagonosed he was only the 7th child GOS knew of and 4 of those were in the USA. Unfortunately, no bone morrow match was found. Our son had the most beautiful huge eyes but, went blind very early. My husband and I have recently become grandparents (27.8.04) and, of course, were very anxious as to the health of our grand-daughter. Thankfully, all seems to be OK at the moment. I did not realise there were so many children affected.
June V Ward <junev.ward@ntlworld.com>
Hitchin, Herts UK - Monday, September 13, 2004 at 09:19:20 (GMT)   Hi i have spoke with some others from here. But i have a son who has Osteopetrosis. Joel was diagnoised shortly after birth and he will soon be 17 yrs old. Joel has had 2 BMT'S and several other things as well. They told me that Joel may come back when he hit puberty and the doctors where right it did in 2000. As of todays date Joel has had his 2nd transplant and has had other complications to follow it. But there is always hope and no matter how these children feel they have alots of life, and energy to give. I would be more than happy to help or answer any questions that anyone may have about anything concerrning this disease. Joel is a fighter and continues to fight everyday but dont forget that it is ok to feel angry as a parent about this disease or any other disease. And it's ok to feel alone or feel like it has taken over but you need to remember that you can get through this and everything comes with it. Keep the faith and beleive in your child or yourself as well...
kathy <lewis5999@bellsouth.net>
Birmingham, Al USA - Wednesday, May 05, 2004 at 22:55:44 (GMT)    <DIV class=comments>My daughter is 10 months old and she is suffering from osteopetrosis. It was discover 5 months back and according to consulting physician she needs a BMT. She is our 1st child and as per physician the donor can be a brother or sister of the baby as she is then only child then who will be the donor. I need your advice what should we do now. I'm willing for the BMT and I got to know that in your country there is a possibility to get a donor other then family member and what if me or my wife want to be a donor. In this case what will be the possibility of success. Here is Pakistan or India there is no possibility of transplant if we don't have a donor. I need another information regarding the success ratio of transplant of any patient and what are the success stories. Can you tell me how much funds are required in whole process. I'm working on the possibility to get financial help from my office and other charity organizations. And what will be the suitable place or country for me to get cure for my daughter. Plz give me a detail reply in this regds and if I forgot any question plz add. Me and my wife love our child very much and don't want to loose her on any cost. Plz help/advice us. Will wait for your reply. Thanks/regds
Ghias Ahmad <ghias@rocketmail.com>
Karachi, S Pakistan - Monday, April 19, 2004 at 06:25:47 (GMT)    <DIV class=comments>My 20 month old son Anthony was diagnosed Nov 6, 2002 with Infantile Malignant Osteopetrosis. He had a BMT on December 12, 2002 at 5 months old. He had a 4/6 cord blood match. Anthony is now 20 months old and doing EXCEPTIONAL!!! Anthony Had Optic Nerve Decompression surgery shortly after his diagnosis to give him a chance at some sight. He is totally blind. Only time will tell if he can see anything. He is the happiest , sweetest little boy !! If any one has questions, feel free to email me, as Im always eager to help someone in my shoes!!
Tracey Dones <TAD4700@aol.com>
Long Island, NY USA - Wednesday, March 24, 2004 at 18:51:22 (GMT)    <DIV class=comments>This is a very serious ailment and I would appreciate it if you could drop me a line to share experiences my viewers will be interested in.
Bill O'Reilly <Oreilly@foxnews.com>
USA - Tuesday, March 23, 2004 at 18:55:30 (GMT)    <DIV class=comments><B>I can't believe I never visited this site before. Purusing your guest