Welcome to our site. This is a site about our second child Marie, born 26. february 1997. Marie was born with Osteogenesis Imperfecta severe, and during her first year she had about 50 fractures. I thooght she was going to be damaged physically by experiencing all this pain, while being so small, but she is today 10 years old and a very happy girl. She is in public school and having lots of friends.
Marie has had more than 200 fractures, we have at least one per month. She has rods in her arms and her legs, which she got to straigthen out her bones and to give her less fractures. We started with her femurs when she was 2 years old and today I still think we should have done it sooner. She has had so many very painfull femurfractures, and after getting rods in her femurs the fractures were not as painfull anymore - they are still painfull but we have seen a clear difference between fractures with rods and without rods. She then had rods in her lower leg and later we decided to get rods in her arms as well - because she had had so many fractures that both her arms looked like an S. All those rods do give her mostly more than one surgery every year - but they are worth it !
When Marie was 1½ we heard about some children in USA having bisfosfoante treatment to lower the amount of fractures. It was new and they did not know the long term effect of it. We compared the unawareness with her life with about 30 fractues a year and decided to give it try. Our pediatrician was willing to try too. Marie started treatment before she was 2 years old, she did have less fractures but only down to about 20 a year. We did however see that she suddenly started develop physical. Like holding her head and trying to sit. We strongly believe that the treatment with bisfosfonate made her life less painfull and therefor she strated develop her body function.
We have tried to give Marie a life as normal as possible. I have spent time watching kids in the same age and what they do and then tried to give Marie the same experiences. When other kids started to sit up alone in a chair then I wanted Marie to do the same. If other kids found amusement in playing with the plants and being told not too, then I held Marie close to the plant and when she started touching them I told her not to do that, even scolded her a bit - I never found out why it was funny - but it surely was !
With this side I wanted to pass on our experiences to new families with children with OI.
On this side you can find pictures of Marie and what kind of aides she has had, if you have any questions feel free to email me at
holm.laursen@mail.dkUpdate september 2007 :
During 2006 Marie had a terrible year with constant pain in her hips and lots of fractures. She could only sit up in a chair for about ½ and hour maybe twice a day, rest of the day she was lying on her bed or on a matress on the floor. From oktober 2006 until august 2007 she was not able to go to school. In february our danish pediatrician John Østergård sent us to USA to get an eveluation of doctors that see many children with OI - we got to see Dr Horacio Plotkin and Dr. Esposito. They did give us some good information but could not help us with the pain issue. At that point Marie was at constant morphine for her pain and still in pain in spite of a big amount of painkillers. We were devastated and scared of the thooght that this might be how her life was going to be !! In april we got hospitalized to get some help. Marie was starting showing symptoms of depression and we were not able to give her any painfree time, the amount of painkillers was to high and we just had to get some help. Marie´s pediatrician John Østergård told us we should stay at the hospital until we had a solution - he was such a big help for us not only doing his job but also very caring and taking care of the whole family. One day Marie´s situation got worse, she was in her room screaming in pain, one of her leg got very swollen and she felt really awfull. We had been figthing with constipation during this period too - morphine always do that to her, so it was not new for us. John came and told me he wanted to do some scans as quick as possible. The scan showed that Marie´s back was so bowed that there was no room for her stolls to get down her pelvis. The scan also showed that she had a bloodclot in her leg. John contacted some other experts adn they decided to send her to emergency surgery to get a colostomi and she had that the same night.
Having the colostomi changed everything, during the next period of time Marie had less pain and could sit up more and after a few month she had no need for painkillers. Her hip pain is gone - it must have been this constipation that has caused it. It did take some time to get her back to her old self, but she regained her energy back and got to go to school at the hospital.
In august she returned to school and is doing great, she loves to be back and could bring home friends every day - if I let her ! The colostomi gives no problems, on the contrary it has taken away so many problems with constipation that we are not fearing that during her next surgery in november. After femur surgery or fractures we always have been trying to fight the constipation - but not any more.