Johnny was my second born out of four children. He was born with Down syndrome and many health issues unique to him. We have had the chance to meet many people with Down syndrome and have yet to meet anyone with all of the health issues he has. Most babies with Down syndrome are born physically healthy or with issues commonly overcome with a surgery.
The good news is, our wide array of experiences and specialists seen over the years have made Johnny a very strong and resilient child! I was in my 20s when he was born and did not have a pre-natal diagnosis and knew nothing of the "medical world.”
I also have a daughter with a chronic health concern. At age three, I discovered patches of white appearing on her olive-toned skin. After seeking diagnosis and treatment from several specialists, it was discovered that my young daughter had a rare rapidly spreading autoimmune disorder of the skin and that there is no treatment for a child that young without unnecessary risks.
When she was school age, she had behavior difficulties adjusting socially and focusing effectively for learning. Her doctors and counselors have helped develop a combination of medications and coping strategies that have helped her excel in every way. She’s on honor roll, enjoys signing up to volunteer in her school, and loves swimming, baking, and summer camp. She aspires to become a veterinarian when she grows up.
I now understand the range of emotions and fears that a parent faces and hope that my experiences can help you know that you are not alone in facing all the unknowns before you. Feel free to email me with any questions about experiences that may be similar to your child's diagnosis. If nothing else, I can offer a listening ear and an understanding from a parent’s point of view.
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