There are times when life comes at us fast. Life, as we know it and dream about it, can change very quickly for parents. One moment we are looking forward to a life filled with joy, excitement, and laughter at the birth of our darling child. The next moment we find ourselves trying to make sense out of words that have been spoken by a doctor about an illness our child is suffering from. It is in these moments that we need a community of supporters to help us know that we are not alone.
Jayden’s Hidden Treasures Inc. is a not-for-profit organization whose vision is the creation of a community where children with special needs are not denied care due to the lack of available financial, emotional, or spiritual resources. This vision was born through our journey as we provided care to Jayden. We faced the need for financial, emotional, and spiritual resources several times during our journey. We also experienced meeting others who faced similar challenges which created the need to help others.
Jayden would have been 11 years old on April 10, 2014. He is one of oldest and longest treated Infantile Pompe patients in the world. Jayden was the third and youngest son to Fanesia and David Johnson, born April 10, 2003 in the South Georgia town of Americus.
He was diagnosed with an enlarged heart soon after birth by Dr. Judy YY Cheng. A heart biopsy indicated evidence of storage material, consistent with glycogen storage. A measurement of his alpha-glycosidase level was low and he was diagnosed with Pompe disease, at 5 months old.
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While we are unable to change the face of healthcare today, we can change how one parent face these healthcare challenges.