Bryce our Grandson Medical Expenses

Early in my pregnancy my obgyn saw on my sons ultrasound that his arms and legs were following a couple of weeks behind normal. He made me an appointment to see UAB's specialist. There they told me my son had a type of dysphasia that they were unsure of. The doctors were worried that his chest might not be big enough to support his lungs and they informed me that my son could be born as a still born. On January 14th I gave birth to my 6lb 11oz beautiful baby boy at Cullman hospital. As soon as he came out the doctors and nurses cleaned him up and took him away. I didn't get to hold my son, feed him his first bottle or even show him off to any of our family. Within hours our son was transported to Children's Hospital in Birmingham. There he was put on oxygen and he would not take his bottle due to his cliff palate, so he needed a feeding tube also. Recently the genetics doctor informed us that our son was born with Kniest dysphasia, which is an extremely rare disorder of bone growth that leads to short stature, malformed joints, and skeletal abnormalities. It's diagnosed only once out of every 1 million births. They are born with craniofacial anomalies such as flat faces, bulging eyes, a short neck, and a cleft palate. They are also born with limb deformities such as club foot. ( which my son is born with every single one of those. ) As children born with Kniest grow older they often have medical issues that require treatment such as scoliosis, joint stiffness and hearing and vision problems. Because of the dysphasia, my son with have to see different physicians multiple times up into his adulthood. Such as an orthopedic for any bone, muscle and joint related issues, a plastic surgeon for craniofacial or hand anomalies, an audiologist for any hearing issues, an ophthalmologist for vision problems, physical therapist and occupational therapist to expand his physical dexterity and skill. Children that are born with this can lead relatively normal lives, will have normal intelligence and a normal life span. They can hold good jobs, get married and have children. He will most likely experience arthritis early in his age and may be unable to participate in certain activities in school. I believe God would never give you anything you can not handle. He was born into a perfect family where everyone will love him for who he is and not what is wrong with him. I know that it will be tough, but with God we can overcome the toughest battles.

Donations

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  • Patty Hood 
    • $25 
    • 72 mos
  • Melissa Cleghorn 
    • $100 
    • 72 mos
  • Barbara Cutcher 
    • $25 
    • 72 mos
  • Lionel Pinn 
    • $50 
    • 74 mos
  • Rick and Sheri Herron 
    • $100 
    • 74 mos
See all

Organizer

Tammy Herron 
Organizer
Centerville, AL
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