“God made me a fighter since birth,” said Levittown resident and newly named Ms. Wheelchair NY USA 2016, Emily Sciarretta. Born at just 24 weeks, Sciarretta’s life has not been an easy one. At the age of 28, she was diagnosed with Chiari Malformation 1—a condition in which the bony space enclosing the lower part of the brain is smaller than normal—before having a number of brain surgeries. And so began her new journey in life.
“I was working and doing quite well when I passed out at work trying to help someone. That’s when I started realizing that something was going on with the brain,” said Sciarretta. “They found out that I have a connective tissue disease called Ehlers-Danlos Syndrome (EDS), a group of inherited disorders that affect conne
ctive tissues, primarily the skin, joints and blood vessel walls. The EDS pulled my spine in the wrong place, anchored it there, and that’s why I stopped being able to walk,” she added, noting that she was also diagnosed with Syringomyelia, when a cyst forms within the spinal cord; Mitral Valve Prolapse, which occurs when the valve between the heart’s left atrium and left ventricle doesn’t close properly and Postural Orthastatic Tachardia Syndrome, when an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position.
“It took a year before doctors diagnosed me, but I realized I would never walk again,” said Sciarretta, who went from being completely able-bodied to being in a wheelchair in the blink of an eye. “I had to go through multiple doctors and neurosurgeons and for other people going through this now, I try to give them hope and let them know that they are not alone.”
Sciarretta has no memory of what it is like to walk and does not understand the concept, even though she only stopped walking 10 years ago. Now 42, she recalls not knowing anyone who was disabled upon hearing her diagnosis, but now knows what it’s like to walk and be on the other side. She also knows what it’s like to be dependent on a service dog.
“A friend of mine came to a nursing home with a service dog and she introduced me to Canine Companions for Independence (CCI). I looked into it and realized at that moment that I had to do this,” said Sciarretta, knowing that a dog would change her life. “I met my husband. Frank, a year after I got my dog, Carmel. Meeting him was one of the highlights of my life. He inspires me.”
Now married two years, Frank recently attended CCI graduation with his second dog, Drew, at which Sciarretta sang. It has been both Frank and his wife’s platforms to raise awareness for the organization that gives so much back.
“CCI changed my life by providing me with the best trained service dogs available. Along with that I gained a new loving family, which eventually led me to meet the amazing woman I married,” said Frank. “Now, together through demos and fundraising, we strive to spread the word of this great organization and pay it forward.”
Sciarretta is also doing her part. She became interested in Ms. Wheelchair USA because she believes that “being disabled or being in a wheelchair shouldn’t make you feel less beautiful than anyone else.” As Ms. Wheelchair NY 2016—she was told she won at CCI with her husband while he was getting his second service dog—Sciaretta used CCI as part of her platform for the pageant, explaining to the general public what a service dog does.
“People don’t understand that these dogs change your life. I’m a paraplegic who only has use of one arm due to a brachial plexus injury, so Carmel is my other arm,” said Sciarretta. “She knew 45 commands and I taught her 20, like training her with a laser pointer to get things I need. She also braces my back when I’m not feeling well.”
The process to enter the Miss Wheelchair pageant requires a 12 page application as well as letters of recommendation. She said the competition was difficult, and not only spoke about service dogs, but shared her talent for singing as well.
“It is an amazing organization and I wanted to show them what I’m like under pressure,” she said of the competition. “Being disabled just means you have to live your life in a different way, but you can still live a very active, successful life. I believed, if I was honored with the crown that I could show others this truth.”
As Ms. Wheelchair, Sciarretta will not only be able to share her platform of “Service Dogs: Changing Lives One Wag at a Time” out to a larger audience, she also gets to embark on other missions for the next year.
“My title is for a year with Ms. Wheelchair, but I am also becoming an ambassador for service dogs and CCI as well as establishing my own speaking engagements,” said Sciarretta. “Ever since I got Carmel five years ago, one of my dreams is to go to a rehab facility and visit with people there.”
Sciarretta and her husband consider Carmel and Drew “gifts from God.” It costs $50,000 to train the dogs and they go everywhere with their owners.
“The dogs give you unconditional love and they don’t care that you’re in a wheelchair. They know that you love and respect them,” said Sciaretta. “We give them plenty of love. There’s a bond that happens with these animals. Carmel isn’t a pet, she’s a family member.”
While it is a devastating blow to lose any ability that you once had, Sciarretta credits her loving husband and her strong faith in God.
“It’s not about us anymore,” she said. “It’s about us taking care of someone else and that’s a blessing. I have a dog that needs me.”
Sciarretta was receiving a new diagnosis every year, but currently, she is in good health. She is working to raise funds to get to Nationals in Ohio in 2016 for Ms. Wheelchair.
“The Dane Foundation is tax deductible, and if anyone wants to kindly donate, they can put ‘Emily Sciarretta’ in the memo field,” she said.
Sciarretta, along with her sash and crown, will be at The Fox Hollow on Dec. 1 for Toys for Tots. She is also available for appearances and discussions. Contact her at 516-938-2686 or email shineything07@gmail.com.
