Beverli Austin's Fundraiser
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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 21oz thickened liquids, no ostomy and no complications from surgery, no gtube. Continues in physical therapy, speech therapy, occupational therapy, feeding therapy and currently receives specialized education in school. He is saying more words and mimicking more, running around and learning to jump. Knows colors and loves to count and sing with Mickey Mouse, Elmo, Blues Clues, Herman the Worm and Ms. Rachel
DSDN is a registered 501(c)(3) non-profit operated by two paid staff members and over 150 volunteers and funded by generous donations from supporters like you.
Check out our most recent Annual Report for more specifics on how we allocate funds.
YOUR DONATION ENABLES DSDN TO:
- Support and connect thousands of families online through our own secure DSDN App at no cost to users
- Fuel our Rockin' Family Fundthrough:
- Pregnancy Gifts
- Welcome Gifts
- Memorials
- Care Gift Cards
- Scholarships
- Adoption Grants
- Gifts to local organizations
- Provide opportunities for parents to connect, be inspired, and recharge at our annual Rockin' Mom™ and Rockin’ Dad™ retreats
- Talk with with medical providers about the diagnosis conversation across the US at national and regional conferences
- Work with OB/GYN residents and medical providers on how to deliver an unexpected diagnosis
- Mail print materials free of charge to local organization, medical providers and families
- Reach thousands of new families joining the Ds community each year
- Connect rockin' families to local organizations