According to a brochure prepared by benefit organizers, SMA is the number one genetic killer of infants and toddlers, causing progressive muscular atrophy and weakness.
Her disease affects most of Eva’s physical movements including the ability to breathe, cough and swallow.
She cannot sit, stand, crawl walk or talk (yet). there is currently no treatment or cure for her disease.
Children with SMA do not typically live past their second birthday, but Ea is one of the exceptions.
Her parents, John and Melissa, plan to stay diligent with her medical care and treatment and protect her from illnesses and germs as much as possible in the hope that her respiratory status will remain stable.
Because she is unable to breathe on her own, she is assisted with a tracheostomy tube that is connected to a ventilator 24 hours a day.
She also has a g-tube and is fed with a feeding pump because she is unable to swallow. She requires around the clock nursing care.
In spite of all this, Eva is a happy little girl. She enjoys living at home with her parents and 7-year-old brother, Noah, and their two cats.
Orange resident Jim Hassenmayer owner of the Orange Ale House is known for his generosity and willingness to help those in need by providing one or two rooms of his establishment and donating the food for benefits such as this one.
The dining area and back room were packed with Eva’s supporters, half of the dining room was filled with raffle prizes donated by many area businesses in Milford, Orange and West Haven.
Hassenmayer said, “The organizers did a fantastic job putting this together. We’re happy to help any way we can.”
Family friend, Susan Saren said Eva was supposed to attend the event, but came down with a virus on Saturday and ended up in the hospital.
She came home on Sunday afternoon, but it was too soon to take her out in a crowd.
Her mom said she was grateful for the wonderful show of support Eva received at this benefit.