Everyone we have been in contact with at EPI goes above and beyond. You feel that you are not so alone in this world.
Twenty-one years ago, Amy Polito was healthy and having a typical twin pregnancy, when her water broke unexpectedly at only six months along. After a short hospital stay and an emergency C-section, her twin boys – Anthony and Alex – were born weighing only 2 lbs and 2.3 lbs respectively.
As micro-preemies, Anthony and Alex were at risk of severe health conditions. Alex contracted an infection and sadly passed away in the hospital. Anthony was born with cerebral palsy and had a brain bleed when he was only four days old. After 86 long days, Anthony came home from the NICU.
Anthony’s mom, Amy, shared this with us: “Life with Anthony has been challenging. In addition to his traumatic birth, Anthony is non-verbal, has autism, and a history of seizures. He is physically 21 years old, but in many ways functions at the level of a four-year old. Although it’s very difficult caring for him, Anthony has brought such meaning and such great joy to my life that I can’t imagine life without him.”
“As a family, we have had to figure out many things on our own. Raising a child with a disability – now an adult – there are so many challenges that are unique to our situation. It’s hard to know sometimes what to do or which direction would be best to move in. As a result we have worked with many different agencies for services and supports for Anthony, and EPI has been simply the best. Everyone we have been in contact with at EPI goes above and beyond. With EPI’s self-directed services, you feel empowered and connected to a world of support. You feel that you are not so alone in this world.”
Anthony began receiving self-directed services from EPI in late 2019 and has blossomed. His family has been able to access respite care and community habilitation services. Anthony loves to swim, and his self-directed budget includes a YMCA membership, where, prior to the COVID-19 pandemic, Anthony swam regularly.
When the pandemic hit and Anthony was no longer able to swim, his mom searched for activities that he could do safely at home. “With Anthony’s physical disabilities and the fact that he is non-verbal, it’s often difficult to figure out what his interests and capabilities are. When I noticed that Anthony had taken a particular interest in cartoons with bicycles, I contacted Jade, Anthony’s Self-Direction Coordinator at EPI and told her about Anthony’s interest in riding a bike. Jade jumped into action!”
Working together, Jade and Amy were able to find a tricycle that was a perfect fit for Anthony, which was not an easy task. It needed to be sized for an adult and be sturdy and safe. This type of equipment is very specialized and quite expensive. Jade was also able to help the family find the funding needed to purchase the bike through accessing community resources and Anthony’s self-directed budget.
“He just loves riding his bike,” Amy states. “We live on a quiet street where Anthony is able to ride quite regularly. Anthony is so proud to ride, it makes him happy! The independence he gets from riding is so important. He needs help in most areas of his life, so it’s just incredible to see him on his bike, pedaling on his own. This wouldn’t have been possible without the support we received from EPI.”
“Our experience at EPI has been just amazing. Their staff is so invested in the families they support.”
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EPI serves over 7,000 children and adults with disabilities and neurological health conditions in Upstate New York. Your gifts will help us continue to provide programs and services that enhance the lives of the individuals and families we support. Please help us fulfill our vision of creating a community where everyone is valued and can thrive.
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