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1244 Route 199

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coltonsxycause@yahoo.com

Colton’s XXXtraordinarY Cause: Our Mission Statement

Colton's XXXtraordinarY Cause is a 501(c)(3) non-profit, volunteer-managed organization.  Our mission is to raise awareness about rare disorders, and to raise funds to support research and treatment for children who have been diagnosed with a rare disorder. We host special events to achieve this goal, and rely on the generosity of individuals, foundations, and corporations to bridge the gaps between financial needs and resources for our benefactors. Ultimately, we seek to raise the kind of awareness necessary to promote early diagnosis and intervention in honor of children like Colton.

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Dominick & Vincent

Dominick and Vincent's Personal Story
Determined Dominick, Valiant Vincent, and the Family that Turned Adversity into Triumph and Hope with Special Olympics New York.

 

We are very excited to announce the honorees of our 3rd annual A Rare Affair, brothers Dominick and Vincent Nasi (age 14).  Despite being twins, they each have a unique set of rare diagnoses, but share the same love of sports and desire to not let their medical conditions slow them down.  As told by their mother DawnMarie, here is their story:

 

Dominick and his twin brother Vincent were born 6.5 weeks early. Vincent was born naturally, but Dominick put up a fight (having been positioned breech) and forty-five minutes later he arrived via emergency c-section. To this day, Vincent doesn’t let Dominick forget he is the oldest, which still makes me laugh.

 

After birth, doctors told us Dominick could not regulate his sugar or his temperature so I could not hold him for a while, which was painful- all I wanted to do was snuggle him.  Both boys were extremely jaundice and needed triple phototherapy (treatment of infants with very high levels of serum bilirubin) which is like having a blood transfusion. Vincent also had trouble eating and he had chronic tongue thrust and stridor (specific airway disorder). Dominick needed to be kept wrapped up as well.

The connection they say twins have is a very real thing, and we saw it right from the beginning. Starting with those early days in the hospital, Vincent would not stop crying until Dominick was placed back in the bassinet with him. They formed a bond that to this day, can’t be broken.

 

After 5 days in the hospital, we were able to take these partners in crime home, but very early on my mommy instincts kicked in. I felt they were not developing normally (it helped that I am a special education teacher), so I arranged to have them evaluated by Early Intervention.  Right away they qualified for OT and Special Instruction. 

 

At around the time Dominick and Vincent were 10 months old, their older sister (the twins are the youngest of 5) was diagnosed as bilaterally hearing impaired.  In the wake of this news I decided to get the rest of my children tested.  One by one I got the official diagnosis that four out of five of my children were bilaterally hearing impaired, including Dominick and Vincent.

As parents, we were taken aback. Raising four deaf children was definitely a learning experience. We did research and educated ourselves but as parents we were heart broken and shed a lot of tears. Our lives were changing before our eyes and weren’t prepared for this or for what was to come.  We felt lost but took the necessary steps. All four children were fitted with hearing aids, got a crash course on audiology, took notes and asked a ton of questions.   Ultimately we were able to get the boys registered into early intervention at New York School for the Deaf.

 

By the time they were 15 months, I noticed Dominick was a jumper and a flapper. He was easily over stimulated and was especially preoccupied with keys, phones, cars and balloons. I knew in my heart that my baby boy had autism. I took Dominick to a developmental pediatrician and every test he took emphasized my fear. Being a special education teacher, I knew, but as a mother, to hear, “Your son has autism and severe ADHD” was devastating.

 

Shortly after his autism/ADHD diagnosis, I took Dominick to a geneticist as I had noticed that for the past year he never sweat. Even when he had fevers, during hot days, during his screaming fits, or whether he was over dressed, he didn’t sweat. The doctors ran a bunch of blood tests and did some observations.  Ultimately he was diagnosed with a rare condition called hypohidrosis or anhidrosis which is the inability to sweat.   Because he is unable to sweat, he is at high risk for heat-related illnesses such as heat exhaustion and heat stroke, which is among my biggest fear.

 

Currently there is no cure for anhidrosis, but to combat this condition Dominick is given Tylenol, ice and water to cool down and uses cool rags to help as well. He must also wear a special cooling vest so he can enjoy the fun outdoors just like any other kid. All his rooms must be air conditioned as well as his school bus.  He can easily get dehydrated which results in muscle cramps, body aches, dizziness, stomach aches, nausea and heart palpitations.  Something as simple as a fever often results in a trip to the ER, where he is treated with cold IV fluids.

 

On top of all this, Dominick has also been diagnosed as bipolar.  Coming to terms will all of this has certainly been a challenge for my husband and I, but we try to take things one day at a time and provide a happy and fulfilling life as best we can.  Unfortunately our obstacles don’t end with Dominick.

 

While we were trying wrap our heads around all of Dominick’s medical conditions, we noticed that Vincent too was struggling.  We found that, like his twin brother, Vincent has autism and ADHD.  In addition to that he was also diagnosed with OCD (Obsessive-Compulsive Disorder) which is a common, chronic and long-lasting disorder in which a person has uncontrollable, reoccurring thoughts (obsessions) and behaviors (compulsions) that he or she feels the urge to repeat over and over, ODD (Oppositional defiant disorder) which is a childhood disorder that is defined by a pattern of hostile, disobedient, and defiant behaviors directed at adults or other authority figures, and PANDAS.

 

PANDAS is short for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. A child may be diagnosed with PANDAS when: Obsessive compulsive disorder (OCD) and/or tic disorders suddenly appear following a strep infection (such as strep throat or scarlet fever); or The symptoms of OCD or tic symptoms suddenly become worse following a strep infection.

 

Vincent’s PANDA diagnosis came with a neck tic that was so severe it was hard for him to function on a daily basis. We opted to remove his tonsils and adenoids for a second time (adenoids grew back), and his tic slowed down to a manageable level, but gets worse when he is sick or under stress.

 

It was a particularly challenging couple of years for our family.  We were in limbo, hoping for a light to bring us some joy. Then something great happened, which impacted our lives immeasurably. When the boys turned 8, we were introduced to Special Olympics NY.  Dominick and Vincent started training and competing in track & field. Their involvement was slow in the beginning, but with encouragement and acceptance, we found they were athletic and they both really enjoyed it. They were happy. It opened up a whole new world for them and our family and changed our lives for the better. Being part of a team, Dominick and Vincent finally felt accepted, they felt normal.

 

Special Olympics NY is a place for us to fit in and belong. It is a nurturing environment where the coaches have patience and encourage the kids to complete a task and learn the importance of teamwork.  Healthy competition exists, but without the meanness.   When one athlete is struggling, the other athletes rally to help and support them.  Many special needs children tend to grow up with feelings of low self-esteem, but involvement in Special Olympics was helping my boys gain confidence.  

After two years of the boys participating in track and field I wanted to play a bigger role, so I decided to help coach. The boys also became interested in basketball, so the head track coach and I joined forces, and trained a group of kids on a basketball team called the Thunder Bolts.

 

As I sit back and watch my boys play basketball or compete in track and field, it is amazes me to see what sports has done for them, an opportunity that wouldn’t be possible without Special Olympics. They have learned skills that translate to real life, such as making friends, and working together towards a common goal. This is very important to me as a mother, to see them have something they look forward to. When they play, they forget their disabilities, and they are happy.  Witnessing this transformation truly melts my heart.

 

For me, coaching is now part of my life. It makes me feel better, especially when I am not in a good mood, depressed or overwhelmed. The spirit of these athletes and seeing how they care for each other while playing sports brings me joy, and it is rewarding to see them keep fighting in life and find love in sports which keeps them going.

 

Dominick and Vincent are tough little dudes. Despite all their challenges and also getting bullied, they continue to keep putting one foot forward and continue to fight like true athletes to win their individual battles. They do their best and that is all I can ask for.

 

I love my family and because of Special Olympics NY, I have a new family. A family that has shown my family, especially my boys, we have abilities and we are accepted. I don’t know where we would be today if it wasn’t for Special Olympics NY but I do know we look forward to great things moving forward.  A Mother’s dream, always.  

 

In honor a Dominick and Vincent, half the funds raised at A Rare Affair 2019 will be donated to Special Olympics NY.  Our hope is that their determination and strength will continue to live on through other athletes like them for many years to come.