Just keep swimming. That is the message from community members to the Stanier family. They want this beautiful family to know they are not alone as they work to help their little girl however they can.
It’s a long road for baby Ava – but one thing is certain – this little sweetie is showered with love and support from her family and community.
Ava Rose Stanier was born on May 24, 2018 with a rare genetic mutation that causes epilepsy with hard-to-control seizures. The seizures started when Ava was just three months old.
Everything changed and hospital visits became a part of everyday life for the Stainer family. At seven months she started having infantile spasms and needing daily injections in her legs for 10 weeks.
The seizures have interrupted her vision causing her to be legally blind. They’ve also caused a delay in her motor skills. Where most babies would be walking by now, Ava can’t even sit up on her own.
Ava has therapy five times a week—two physical, one aquatics, one vision, and one occupational therapy to help her move her left side as the seizures are occurring on the right side of her brain. She will soon be starting two more therapies for feeding and speech.
Ava’s family do not have any answers to whether Ava will ever see, walk, or whether they’ll find a medication to keep the seizures to a minimum.
Ava has been seen by Strong Memorial hospital in Rochester and Oishei Children’s Hospital in Buffalo. She will be flying to Duke Children’s Hospital in North Carolina and Children’s Hospital in Boston is a possibility. The Staniers have no idea what their future holds. They just want to do whatever they can to help their sweet Ava.
Family and friends are hosting a benefit for the Stanier family to help with some of the mounting medical costs, travel costs and everyday expenses.
Please join us to show support for The Stanier Family. Tickets are $25 and includes food, beer and wine, snack and refreshments, and live music. There will be raffle baskets and gift cards, big ticket items, a 50/50, and more!
WHEN: March 28, 2020 from 4-10 pm
WHERE: North Collins Conservation Club, 2636 Conger Road, Collins, NY
COST: $25 per ticket – includes food, beer, wine, snacks and live music.
WHAT TO EXPECT: Live music, gift cards, big ticket items, basket raffle and 50/50