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Family of Gilford youngster with rare disease asks community for help

By JOHN KOZIOL
Union Leader Correspondent

April 15. 2018 9:57PM
Joined by his mom, Melissa, Christian LaPorte shows off one of his most prized possessions: a mosasaur fossil. Christian is battling a rare, pediatric version of a disease of the autonomic nervous system. His mom has launched a GoFundMe effort to cover the cost of his seeing specialists in Wisconsin. (John Koziol)
Christian's Cause
The gofundme page for Christian can be found at https://www.gofundme.com/6ptnma-christians-cause.



GILFORD — There are many heart-rending appeals on the GoFundMe crowdfunding platform, but few may be more poignant than that of Melissa LaPorte’s.

“My son Christian has suffered since the day he was born,” writes LaPorte, in asking for $7,500 to pay for her and 9-year-old Christian to travel to the Children’s Hospital of Wisconsin in Milwaukee in June for a battery of tests.

LaPorte expects the tests will confirm a Sept. 27 diagnosis from Massachusetts General Hospital of dysautonomia, a disease of the autonomic nervous system. Among other things, the system controls heart rate, blood pressure, digestion, kidney function, respiratory rate and temperature.

LaPorte hopes that doctors Gisela and Thomas Chelimsky will be able to provide a treatment plan for Christian and his medical team at Mass General. There is no cure.

Christian, who prefers to go by “Chris,” suffers from headaches, sinus tachycardia, sinus bradycardia, fainting, tremors, stomach pain, burning pains in his hands and feet, febrile seizures, insomnia, severe exhaustion, brain fog, memory loss, toe walks and daily vomiting.

LaPorte, a single mom who was forced to give up her nursing career to be her son’s full-time caretaker, said at three weeks old, Chris was treated for liver failure; at 5 he had emergency brain surgery. It was only last year that his doctors were able to connect all the dots.

His neurologist, cardiologist and gastroenterologists directed the family to the Chelimskys, two of only a handful of pediatric dysautonomia specialists nationwide.

They agreed to see Chris immediately and with the Children’s Hospital of Wisconsin offered LaPorte a significant discount. The tests, which normally would cost in the tens of thousands of dollars, will cost LaPorte $6,990 out of pocket.

That great news was tempered by the boy’s medical insurer’s denial of the expense.

“I cried,” said LaPorte, who lives with Chris at her parents’ home on Morrill Street, “but as a parent, I realized that you can’t be ‘Oh, poor me,’ that I have to do something.”

That something has included an unsuccessful appeal to the New Hampshire Insurance Commission, and on April 7, the launch of a GoFundMe page.

On April 21, LaPorte will be at the Gilford Indoor Yard Sale to promote awareness of dysautonomia and to raise money for the trip to Milwaukee.

She is hoping that the care plan the Chelimskys develop for Christian, whom she home-schools, will mean that he will “be able to have a much better life.”

“I want him to be as normal as any other 9-year old child,” said LaPorte of Christian, who turns 10 on April 29.

Chris has some amazing plans for his future, said his mom.

“He wants to be a bio-chemist. He wants to be the scientist to bring dinosaurs back to life,” she said, adding that Chris has been reading extensively about dinosaurs and knows that he would have to create a bio-dome for them because the existing atmosphere isn’t rich enough in oxygen.

Dinosaurs top the list of Chris’ favorite things, followed by, he said, food, video games and “my bed” where he so often seeks respite from his pain.

Although dysautonomia affects some 70 million worldwide, it is extremely rare in children as young as Chris. LaPorte said she recently did an Internet search and found that in all of New England, there was only one other known case of pediatric dysautonomia.

“There are no other options,” she said. “Milwaukee is the option.”


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