Little T's Rockin His Genes

TyVel’s story - A testimony to how sufficient God’s Grace has been

TyVel, born at 27 weeks. Diagnosed with tetrology of fallot and bloodwork indicated trisomy 21 while pregnant. At three months diagnosed with Hirschsprung’s disease and gets colostomy bag. Came home January 3 at 4 months and only six pounds. Seven months has heart surgery unexpectedly, had to be resuscitated after they gave him gas anesthesia, diagnosed with obstructive sleep apnea, aspiration and severe reflux, immediately stopped feeding by mouth. Came home June 5 after six weeks in the hospital and a fight with insurance to get a bipap machine.

Gtube placed a few weeks later. A few months later, diagnosed with eczema. A few months after that, diagnosed with hypothyroidism. Didn’t sit up on his own until about 19/20 months old and walked on his own around 30-32 months old. Had ostomy reversed around 30 months old had gtube reversed a few months later. Countless hospital stays, procedures, sleep studies, swallow studies, 4 major surgies.

Currently - eats by mouth, is drinking at least 40oz thickened liquids, no ostomy and no complications from surgery, no gtube, no bipap/cpap. Continues in physical therapy,  speech therapy, occupational therapy, sensory therapy, feeding therapy and specialized education. He is saying more words and mimicking more, running around and jumping, and working on using his new assistive device. Knows his colors and loves to count and sing along with Mickey Mouse, Elmo, Blue’s Clues or pretty much anyone singing or any music playing. 

Welcome to our Pittsburgh Buddy Walk® team fundraising page! We are walking to show our support for our child and more than 400,000 other individuals with Down syndrome in the U.S. Every dollar we raise brings us one step closer to ensuring that our child and every individual will have the opportunity to reach their potential.

Our fundraising efforts will support local programs and services, as well as National Down Syndrome Society advocacy and public awareness initiatives that benefit all individuals with Down syndrome.

Make your tax-deductible donation today and take the first step toward helping us achieve our goal. Thank you for your support!