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Hi my name is Mario Novello and I was born on Sept.17th 2008. I was diagnosed when I was 5 months old with a very rare chromosomal 4 deletion which causes me significant developmental delays, low muscle tone, a leaking vessel in my heart along with a hole in my heart which needs to be repaired when I am 4 yrs. old. I have a short stature; distinctive facial features, relative macrocephaly (an abnormally large head), seizures, brain malformations and my most recent diagnosis are renal disease and hypothyroidism. My condition is so rare that there are only a few individuals in the medical literature reported with deletions in the same region of chromosome 4, although the exact breakpoints of the deletion are unique to me. My geneticist told my mom and dad that I need frequent abdominal ultrasounds and blood work to screen for signs of tumors, since early detection can improve my survival. I have this done four times a year. I see 7 specialists who are all trying to help me and learn from me so that they may be able to help other children who are diagnosed with my condition. I cannot talk, sit up, crawl or walk. I have my very own customized wheelchair which helps me to sit up nice and tall. I go to school twice a week where I receive physical, speech and occupational therapies and my teachers sing and play with me. (I really like that). My parents also take me to rehab once a week for additional therapies. Love Mario
....and, so begins the statement written on Mario Novello's website.....
Last week, I met Mario, his Mom, Lynn, and Dad, Derek - without a doubt, two of the most incredible parents that I've EVER met.
Debbie, a friend of mine, asked me to promote the 5th annual fundraiser to support Mario's Mission which will be held Saturday, 08 August , noon -4p at StoneYard Grill and Tavern 41 South Main Street in Niles, Ohio, I invited the Novellos to come in to the studio.
They came in smiling, Lynn, a very lovely lady and Derek, a good looking guy, and Mario, an adorable little boy in a specially designed stroller, that I later learned, cost $7,000.
Lynn offered to take Mario out of the studio when he began to cry. I asked that she please stay, as I felt it was important for people to know what their lives are like. Mario cries and Lynn and Derek don't always know why. Mario is unable to tell them, even a 6 years old. Lynn placed Mario across he lap, lifted his shirt and gently, oh, so gently, stroked Mario's stomach and chest. I looked up, and , while talking with me, Derek was rubbing Mario's head. I was so taken by their loving-tenderness and compassion for little Mario, watching them brought me to tears.
This is their life, caring for a loving this little, beautiful boy, who's hopes of getting well ---- cured, don't exist. There is no funding, as Q4D is so VERY rare.
These beautiful people are asking the community to come out and support Mario's Mission : "Help Mario Find a Cure for Q4D"
They're having a basket auction, 50/50 raffle, a 'cornhole' tourney, a portion of the proceeds of food and drink will be donated to Mario's Mission. You can donate thru the website : http://www.mariosmission.com/" target="_blank" rel="nofollow">www.mariosmission.com or call Brandon Shields at 330.540.6654
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