Just Keep Swimming
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My niece, Ava Rose Stanier, was born on May 24, 2018 with a rare genetic mutation that causes epilepsy with hard to control seizures. This was discovered when the seizures started at three months old, which is when the hospital visits became a part of everyday life for the Staniers. While there may be a lot of research in epilepsy, unfortunately there is not in Ava’s gene mutation. At seven months she started having infantile spasms and needing daily injections in her legs for 10 weeks. It was extremely important she not get sick in this time period, or it would be an immediate visit to the hospital.
The seizures have interrupted her vision causing her to be legally blind, with no answer as to if she will ever see. 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 in the beginning of 2020, for feeding and speech. At 18 months old, she has a special wheelchair fitted for her size.
My sister and her family have no answers to whether Ava will ever see, walk, or whether they’ll find a medication to keep the seizures to a minimum. It’s hard to look into the future and be hopeful when we don’t know if anything will change in five days, five months, or five years.
Ava has been seen by Strong Memorial hospital in Rochester and Children’s Hospital in Buffalo. She will be flying to Duke Children’s Hospital in North Carolina in January, and Children’s Hospital in Boston is a possibility. With no answers, the Staniers have no idea how many hospital visits are to come, therapy sessions Ava will need, or what exactly the future holds.
This link is in addition to the fundraiser we're having, for those who wish to help, but can't attend.
Thank you to all who help out!!
The seizures have interrupted her vision causing her to be legally blind, with no answer as to if she will ever see. 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 in the beginning of 2020, for feeding and speech. At 18 months old, she has a special wheelchair fitted for her size.
My sister and her family have no answers to whether Ava will ever see, walk, or whether they’ll find a medication to keep the seizures to a minimum. It’s hard to look into the future and be hopeful when we don’t know if anything will change in five days, five months, or five years.
Ava has been seen by Strong Memorial hospital in Rochester and Children’s Hospital in Buffalo. She will be flying to Duke Children’s Hospital in North Carolina in January, and Children’s Hospital in Boston is a possibility. With no answers, the Staniers have no idea how many hospital visits are to come, therapy sessions Ava will need, or what exactly the future holds.
This link is in addition to the fundraiser we're having, for those who wish to help, but can't attend.
Thank you to all who help out!!
Organiser and beneficiary
Stephanie Krueger
Organiser
Buffalo, NY
Kristina Stanier
Beneficiary