6 weeks after birth he was officially diagnosed with Kniest dysplasia or Sticklers Syndrome which is due to a genetic mutation. Kneist Dysplasia is a very rare disorder of bone growth that leads to short stature, can lead to bone and joint issues and possible problems with vision and hearing. He will most likely need bracing for his hip joints in the coming months. He currently has many specialist including orthopedist, retinal specialist, gastroenterology, geneticist, as well as speech, physical and occupational therapists.
Sam’s biggest challenge since birth has been feeding. This has been a real struggle and they have tried nearly everything imaginable. Sam was recently re-hospitalized for this and had a G-Tube placed in his stomach for feedings. This unfortunately requires a lot of maintenance and care which really consumes Maria & Josh’s time. The future still holds unanswered questions and hurdles for Sam and his mommy & daddy.
We would love to raise money to assist them through this time. One of their biggest needs is help with meals. As many of us friends and family do not live near them we felt the best way to do so is to provide monetary support to obtain already prepared meals for them. There are several options near them to aid in this and one of Maria’s sisters will also be helping to facilitate this on their end with the money we raise. Gas expenses and parking fees are also adding up. These needs will be ongoing, as Sam’s appointments will continue to be frequent. These last few months have been quite emotionally and physically exhausting for them, so if we can help with the financial stress we can at hopefully decrease the burden from that aspect at least!
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