November 22, 2012

Four-month-old, family dealing with rare genetic disorder

Nov. 30 benefit dinner to help Chandler Melanson's family cope with child's DiGeorge syndrome

By Keith Edwards kedwards@centralmaine.com
Staff Writer

AUGUSTA -- Four-month-old Chandler Melanson is a different baby since he left the hospital two months after his birth.

click image to enlarge

Four-month-old Chandler Melanson’s parents are optimistic about his future, after he was born with a rare genetic disorder.

Contributed photo

click image to enlarge

Augusta Public Works employee Nick Melanson, center, is receiving help from colleagues, including David Burlingame, left, and Ryan Theberge, after his son was born with a rare genetic disorder.

Staff photo by Andy Molloy

Benefit dinner for Chandler Melanson and his family

• Friday, Nov. 30, 6 p.m.
• Le Club Calumet, Augusta
• Spaghetti dinner, dancing and music with DJ Ron Neron, and auction of items and services donated by local businesses
• Tickets are $10 and available at Augusta Public Works during business hours, College Carryout in Augusta, and New Identity hair salon in Manchester
• Tickets must be bought by Tuesday
• People can also make a donation to an account for Chandler at cPort Credit Union

"He's happy," said his father, Nick Melanson, who throws rubbish into garbage trucks for Augusta Public Works. "He smiles a lot. He laughs. He's a tough little boy."

Chandler underwent three surgeries in his young life, and is breathing with the help of a tracheotomy tube, eating with the help of a feeding tube and expelling waste with the help of a colostomy bag.

He was born Aug. 8 with DiGeorge syndrome, a rare genetic disorder, and his symptoms include an underdeveloped airway, a malformed anus and only one kidney. He's expected to need more surgeries.

Overall, though, Nick Melanson figures he and the family have lucked out. It could be worse, as the syndrome, which is caused by a chromosome defect, can result in the poor development of several body systems, affecting the heart, development, immune system and more, according to the website of the nonprofit Mayo Clinic.

The number and severity of problems associated with the syndrome, according to the Mayo Clinic, can vary greatly but almost everyone with it needs treatment from specialists.

All Chandler's current symptoms can be addressed, Melanson said. His brain scan looked good. And Melanson said reconstructive surgery should allow his son to get rid of the colostomy bag, he should grow out of the need for the tracheotomy and they hope to be rid of the feeding tube in about a month.

But they're still unsure what the syndrome may hold for their child in the future.

"Everything he has now because of the syndrome is fixable, we've been pretty lucky so far," Melanson said, knocking on a wooden table in a conference room above the public works garage earlier this week. "What the future holds, you just hope and pray."

The family includes Chandler's mom, Tiffany Barrett, who shares an apartment in Farmingdale with her two daughters, 12-year-old Sam and 3-year-old Chelsea.

The couple has health insurance, but it doesn't pay for all of Chandler's needs. And before leaving the Barbara Bush unit of MaineGeneral Medical Center in Portland, they needed to get medical equipment and supplies before bringing Chandler to their Farmingdale home, where he needs around-the-clock care. A nurse comes to help Barrett at home while Melanson is at work during the week. But they're on their own at night, and Chandler needs someone to administer a nebulizer for him every two hours to make sure he doesn't choke on his own mucus.

Melanson said Chandler got clogged up with his own mucus at the hospital twice, causing him to be unable to breath.

Melanson said he was nervous about bringing the baby home at first, because there wouldn't be a team of medical professionals to help with his care.

Even so, Chandler has been so much happier at home, and Melanson said Barrett has done a great job caring for their son.

The couple have received help from both of their families. And from co-workers.

A benefit spaghetti dinner is scheduled for Friday, Nov. 30, for Chandler and his family at Le Club Calumet. It was organized by Dave Burlingame, a heavy equipment operator in public works and president of the local council of the American Federation of State, County and Municipal Employees, and Ryan Theberge, an equipment operator. The event starts at 6 p.m. and will include dancing, DJ Ron Neron, and an auction of numerous items and services donated by local businesses.

"When we found out about this, the baby and Nick and everyone were in the hospital in Portland," Burlingame said. "We got together and put some cash in a card, but it seemed like Nick needed a little bit more than that."

Melanson appreciates the support the family has gotten at home and work.

"I don't know what we'd do without all the help we've gotten from family, and everyone here," Melanson said.

His co-workers said there is no doubt that if they were they in need of a helping hand, Melanson's would be extended to them.

"I've known Nick since we were kids," said Theberge. "He's the type of guy who would give you something even if it would put him out. That's just how he is."

Keith Edwards -- 621-5647
kedwards@centralmaine.com

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