03/26/2025
: Meet Sylvia! Sylvia was born with a very rare genetic disorder, Rett Syndrome & epilepsy. Rett Syndrome usually becomes apparent between 6 - 18 months and they have increasing problems with the use of muscles that control movement, coordination and communication. She recently graduated high school and lives with her beautiful family that supported her unique needs! She gets around by wheelchair, however, she can walk! Just stay close in case her Rett Syndrome symptoms show themselves. She has mobility challenges that require support, an AAC device she leverages for communication (uses eye tracking to choose words to form sentences), incontinence, and various muscle tones that require support with her activities of daily living.
Her family contacted to learn more about program for children & young adults with medical fragility and functional limitations ( ). Given that she’s over 21, we helped her family get her setup with a 3rd-party funding source while she waited for her name on the GA NOW/COMP Waiver list to take over funding. We hired and trained a great Certified Nursing Assistant (CNA) with CPR/First Aid, clear tuberculosis screenings and federal s*x offender & background checks. Sylvia now has a personal caregiver to help her with her morning routine (transfer to chair, toileting assistance, dental hygiene, bathing, dressing, medication assistance, and more), light house keeping and meal prep for after her day program lunch and dinner.
Monday through Friday, AHS supports Sylvia allowing her family to focus on work, parenting and not Sylvia’s Rett Syndrome or the transition to adulthood!
GA GAPP services ages 0-21 and families should join the NOW/COMP waitlist ASAP to reduce wait times at 21 years old.
🔗Visit Link in Bio to learn more! 🔗
