By TAYLOR HARTZ
Nicholas Kelly is a four-year-old Southington resident who suffers from Angelman Syndrome (AS), a rare neurological genetic disorder that affects only 1 in 15,000.
Nicholas’ condition causes him frequent seizures, and prevents him from speaking or walking independently. The four-year-old has a packed schedule of back-to-back therapies to aid his physical and emotional development. Part of his weekly schedule involves Sunday morning mass at the Immaculate Conception Church (ICC).
Nicholas’ parents and grandparents have been attending the ICC for decades, and the congregation is now rallying around the family to help raise awareness and funding for AS.
On June 12 the ICC Men’s Club will host a pasta supper in honor of Nicholas, his parents Marcy and Chris, and his younger brother Michael. For $15, supporters will enjoy pasta, sausage and meatballs, salad, and desserts, all to benefit the Kelly family.
“The men’s club became aware of this need in our parish and felt this was a perfect opportunity for us to contribute as a Christian organization,” said John Griglun, a member of the Men’s Club and organizer of the event.
Griglun said the club could not think of a “more worthy cause than supporting Nicolas and his family in their time of need.”
While Nicholas suffers from physical and developmental delays, his family works to provide him round-the-clock life-long care. In addition to seeing therapists several times a day to assist with physical, occupational, speech, dietary, music, and swim therapy, the Kelly family monitors a strict diet, several medications, and countless doctor appointments.
Diagnosed at 18-months-old, Nicholas can have up to 20 seizures a day. The four-year-old has braces on his legs and struggles to eat and drink, often leaving him dehydrated.
To help with his seizures and diet, Kelly sees a specialist at Massachusetts General Hospital three times per year. He has been prescribed a medication for his seizures that costs the family close to $500 out-of-pocket each month. An additional seizure medication adds $200 to the monthly bills. The Kelly’s also bear the cost of a $3,800 payment for Nicholas’ care at the beginning of each year, several therapies not covered by insurance, $150 in dietary supplement shakes each month, and the expense of diapers.
As he grows and ages, Nicholas will require higher dosages of his medication, meaning a higher bill, and the braces on his legs will need to be re-fitted. Marcy Kelly, Nicholas’ mom, said she is incredibly grateful to the ICC parish for the fundraiser.
“It would be so helpful just to be able to not worry for a month,” said Kelly, who said the family often faces a choice between paying their mortgage and purchasing Nicholas’ medication.
Due to severe seizures and dehydration from his inability to eat and drink regularly, Nicholas has made several trips to the hospital this year, including a few stays in the Intensive Care Unit.
“We’re trying to pay down these bills,” said Kelly, “but they just never stop.”
“We make sacrifices and forego a lot of things without taking away from them. We try to provide for all our kids as best we can,” said the mom of two boys with a baby on the way. “But we’re barely making it.”
Although the family has insurance, Kelly said that receiving approval for Nicholas’ care is “a constant battle” that is leaving the family “pretty strapped” financially.
“You never expect to have this happen, and he will require lifetime care,” said Sandy Picone, Nicholas’ grandmother, who works as a secretary at ICC. “It’s really hard for them. There’s just not enough money.”
Picone said she hopes the event will also “raise awareness to this disorder, as most people have never heard of it.”
While she hopes for a cure, she knows her family is doing everything they can to help Nicholas learn to communicate and walk. His speech therapist helps Nicholas learn to communicate with an iPad, and botox injections help lessen the rigidity of his legs.
“We hope there will be a cure. We hope that he will be able to do some of these things like walk and talk,” said Picone. “We don’t know, but we can only hope.”
Despite his daily struggles, Kelly said Nicholas enjoys attending church each Sunday, works hard as a pre-K student in the integrated program at Hatton Elementary School, and always lights up the room.
“He’s always smiling,” said Picone. “He’s always happy, and he has just nothing but love for everybody.”
Nicholas’ fundraiser will feature raffle items donated by parish members and local businesses, and all proceeds will go to help the Kelly family with medical expenses and raise awareness for AS.
Donations will be accepted and should be made payable to Immaculate Conception Church. Tickets can be purchased after Sunday mass at ICC or by contacting John Griglun at (860) 919-5545.
The event will take place from 2p.m.-6p.m. on June 12 at Falcons Hall, 33 Knowles Ave. in Southington.