The story of Grace

During my 20 week anatomy scan we learned that our baby had arthrogryposis. The doctors told us she could not and would not ever move and would most likely be in a vegetative state, if she even survived the pregnancy. Fast forward two and a half years and we have a very feisty little toddler! Grace was diagnosed at 1 month old with ZC4H2 deficiency or ZARD (ZC4H2 and related disorders) adding her to the approximately 250 other known cases world wide. Grace was born with a sub-mucous cleft, a tethered spinal cord, joint contractures in her upper extremities, and her knees did not bend. Her feet were stuck flexed upward, her toes almost touching her shins. She was very stiff and rigid. Once we got the diagnosis, I found the ZC4H2 Foundation and with the help of the other parents and members, we are seeing Grace make huge strides in her physical and cognitive abilities. After fighting for two years, we were finally able to get her tethered cord diagnosed and repaired in April of 2023. Since then, along with a lot of physical, occupational and speech therapies, Grace is able to bend her right knee more than 45 degrees (something we were told would not be possible without muscle lengthening surgery.) Her left leg is a little behind due to a distal femur fracture this fall. Due to bone demineralization, unfortunately, breaks in the femur are not uncommon with our kids. Although she has had some set backs, Grace is able to use a self propelled wheelchair and is learning to use a gait trainer/ walker. Looking back to what we were told before she was born to now, there should be no question why we gave her the name we did, she is God’s Grace and we get to see her every day.