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What you need to know for 01/20/2018

Family fights disease affecting young son

Family fights disease affecting young son

Today is a big day for Caleb Cunniff. It’s the day the 4-year-old with spinal muscular atrophy recei

Editor's note: This August 2011 story, from our archives, details the efforts of Trooper David Cunniff and his wife Amy to help their son cope with spinal muscular atrophy. Trooper Cunniff is in critical condition this morning at Albany Medical Center following an accident Monday on the Thruway in Amsterdam.

Today is a big day for Caleb Cunniff.

It’s the day the 4-year-old with spinal muscular atrophy receives his first motorized wheelchair.

For Cunniff, son of David and Amy Cunniff of Duanesburg Road, the wheelchair means mobility for the first time in years.

Cunniff can’t walk as the genetic disease causes his muscles to lose function. It is incurable and can lead to death. His mother and father have to carry him everywhere.

With the wheelchair, he will be able to zip around the house and keep pace with his only other sibling, Zachary, 2.

“I can say, ‘Caleb, come here,’ ” said his mother. “I have never been able to say that.”

The wheelchair is part of a larger plan to help Caleb and his family adapt to his medical condition as he grows older. Caleb’s prognosis is good in that he could live a long life, provided he does not contract respiratory complications. SMA often weakens the muscles that support breathing.

The Cunniffs said no treatment currently exists for SMA. They want to help find a cure. Toward that end, they plan to help raise money for the Families of SMA, a nonprofit based in Elk Grove Village, Ill.

As part of their plans to help Caleb, the family hopes to purchase a special van with a wheelchair lift and equip their modest home with handicap-adaptable devices. The Cunniffs also want to participate in clinical trials for the disease, which will require travel. The van and its upgrades cost approximately $60,000. The Shriners Hospitals for Children is donating the wheelchair, which is valued at $15,000. Doctors at the hospital in Boston diagnosed Caleb’s disease using a blood test.

David Cunniff is a state trooper with Troop T; Amy is a stay-at-home mom who teaches home school occasionally. They have a Medicaid waiver that will cover the cost of the van modifications, but other items will require financial assistance.

The Cunniffs said they were not looking for charity and were determined to find a way to cover their other expenses. But the New York State Troopers Police Benevolent Association approached the family and offered to help.

“We are incredibly humbled. We have never had to rely on others, but we have had to depend on others for help,” Amy Cunniff said.

The PBA is sponsoring a Troop T Zone 2 picnic fundraiser on Aug. 28. It will be held at Henry Hudson Park on Barent Winnie Road in Selkirk from 12:30 to 6:30 p.m. The fundraiser will include a barbecue, games, face painting and other activities. The cost is $10, which is tax-deductible. Children 3 and younger will be admitted free.

David and Amy were high school sweethearts who have been married 12 years. David has been a trooper for seven years. Caleb, their first child, was diagnosed with SMA in 2009. Zachary does not have the disease.

Amy Cunniff said the news of Caleb’s diagnosis was devastating to the family. “They told us not to have any more kids. It was a punch to the stomach. We planned on having four or five kids,” she said.

David Cunniff said the family has had to adjust their plans to take into account Caleb’s disease. “We had our whole life planned and this touches on all aspects of our lives,” he said.

They said they willingly accept the challenge. “Caleb is our primary concern,” David Cunniff said. The family has received considerable support from their church family, members of Grace Fellowship Church. “We take one day at a time. You don’t have much choice when you are in this position,” David Cunniff said.

Caleb is beginning to understand his disease, but he is finding it frustrating, said his mother. “He was crying because he couldn’t work his Legos. He wanted to give them away,” said Amy Cunniff.

His parents explained as best they could that the disease makes his muscles weak and that he will have problems with his toys. “He is seeing a counselor,” said his mother. “It is heartbreaking as a parent to see your child go through this.”

But Amy Cunniff emphasized that the family is strong.

“We don’t want to be pitied, and I don’t want Caleb to be pitied. We have to find a cure,” she said.

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