Hello. My name is Nicole. A few months ago my husband accidentally dropped our son and they found multiple fractures at different stages of healing. We have no idea how they got there and he never had any bug bruises or anything. His vitamin D levels are borderline. We live in MO and are pretty poor but I heard you work with families and travel. Thank you in advance.
This is what has happened to her and her family.
My son was taken at 3 months old, he is now a year and a half. As soon as we took him to the Dr and found out he had multiple fractures we were confused and terrified and didn’t understand who could hurt our child. We were then blamed and had our child taken away. We found a group called fractured families who put us in contact with Dr.Holick and other Drs to help us. So we pulled out my 401k and took a trip to Boston MA to see Dr. Holick. He was able to diagnose us with EDS. We also found out later our son has an OI gene. We went to family court and even with this they said we were guilty. We were arrested and put in jail for 3 months with no bond. We were finally released on bond but with the condition that we don’t see each other or our child. We had to get out to fight so we did. They are current trying to terminate our parental rights and we have to go to trial but we are not giving up. We are fighting and trusting in God. We are so thankful for the Drs who are helping us. No parent should have to go through this and we are thankful for Dr. Holick for bringing this issue to light so that no family will ever have to go through the trauma we did. We prayed for this baby. We will keep fighting.
Follow-up from Dr. Holick:
I saw the mom and dad in my Ehlers Danlos Clinical Research Program and found that they both have the bone and capillary fragility disorder Ehlers Danlos syndrome hypermobility type. A careful review of their child’s medical history revealed that the child has many of the classic medical conditions associated with this genetic disorder including joint clicking and easy bruisability. I have been seeing infants, children and adults with Ehlers Danlos syndrome hypermobility type since 1978. I have seen over 3000 patients with this genetic disorder and more than 500 of them being infants. I have also seen more than 100 families who have been accused of child abuse and found that at least one parent had this autosomal dominant bone fragility genetic disorder. By being autosomal dominant means that 50% of the parent’s offspring will acquire it. If both parents have it then their offspring have a 75% chance of acquiring it as is the case for Nicole’s family.