Michael Hubbard’s family sets sights on new group home for young brain-injury patients

When Nancy Reyer laid eyes on the run-down vacant farmhouse for the first time Friday afternoon, she was momentarily overcome with emotion.

“I always thought when I brought him home —” she said, her voice faltering and her eyes brimming with tears. “I hoped I could bring him home the way he was,” she said, a sob escaping her throat. “Before.”

Before.

Before the explosion of a citronella firepot on Memorial Day weekend last year slathered her 14-year-old son with a flaming gel substance likened to napalm by doctors and firefighters, leaving him with third-degree burns over 40 percent of his body.

Before massive organ failure resulting from those severe burns put the strapping teenager into cardiac arrest nine days after the accident, leaving his brain without oxygen for 13 precious minutes.

Before everything that was the world as Nancy Reyer knew it changed forever.

The reality of her son’s future at a group home for young victims of traumatic brain injury stood before Nancy Reyer Friday in the form of the two-story, wood-frame farmhouse at 4079 Sound Avenue.

Possessing the courage of a gladiator thrust into an arena to face a hungry lion, Reyer did what she’s done a million times since May 28, 2011: She shook it off.

“There’s a lot of work to be done, that’s for sure,” she said, surveying the premises.

The house has been donated to an organization dedicated to the care and rehabilitation of survivors of traumatic brain injury — TBI to those unwillingly “in the know.” It is named “Brendan House” in memory of TBI victim Brendan Knight Aykroyd.

The organization, New Beginnings Community Center, was founded by Allyson Scerri of Remsenberg, an outgrowth of her quest to provide adequate care for her own father, Al Barone, a TBI survivor injured in a motorcycle accident in 2007 at age 67.

“When I went out to find care for him, I was shocked to see there just isn’t anything out there,” she said in a phone interview last week.

“I was a hairdresser,” Scerri said. “I learned the hard way, caring for my father.” He lived with her for three years, until he was able to live, with help, on his own.

Scerri’s experience led to the founding of New Beginnings and an outpatient facility in Medford, which opened in April 2011.

Nancy Reyer began attending support groups for parents of children with TBI at Scerri’s center last summer, while Michael was hospitalized in Stony Brook.

There she met New Beginnings vice president Kate DiMeglio, whose son is also a TBI survivor. Now 34, Robert DiMeglio was injured in a car accident on his 21st birthday. His mother, like Reyer, has dedicated her life to caring for her son.

The need for a residential facility for young TBI survivors is dire, Scerri said.

“There just isn’t anything for them anywhere on Long Island,” she said.

Reyer, who has lived in her son’s hospital room — first in the pediatric intensive care unit at Stony Brook University Medical Center, and then, since September, at Blythedale Children’s Hospital in Westchester — agrees.

When the day comes that Michael will have to leave Blythedale — a day in the not-too-distant future — and move to a long-term care facility, there simply is nothing for him anywhere near his Riverhead home.

“The closest appropriate place is in Queens,” Reyer said Friday. Unlike the hospitals where she’s been able to sleep on a cot at her son’s bedside, the long-term care facilities won’t let her stay in his room.

“I’ll have to commute,” Reyer said. If Michael can get into the Queens facility, she has cousins in Queens that will be able to put her up, so she can, she hopes, be nearer to her son.

She works with him daily on exercises she hopes will improve his cognitive abilities. Michael is alert. He recognizes his mother, laughs and makes sounds. He has not spoken a word since May 28, 2011. Physical therapy has brought him to a point where he can sit in a wheelchair and he is able to use his hands to touch the screen of an iPad and play a variety of special games aimed at improving his cognitive function.

Reyer is struggling to come to grips with the fact that her son, who will turn 16 on Aug. 16, may not recover from the devastating injuries inflicted by the firepot explosion. But through it all, her faith has not faltered. She sees many miracles in Michael’s progress and she believes the miracles will continue.

“They say in these cases, what you have after six months is all you’re going to get,” Reyer said, referring to the typical TBI victim’s recovery. “But that hasn’t been the case with Michael. He’s continued to make progress. He’s made a lot of progress since six months after the injury,” she said.

Reyer has been home in Riverhead since Tuesday and plans to return to Blythedale on Monday. It’s the longest period of time she’s been separated from her son since the accident last year in her sister’s backyard. Her family gathered there Saturday night to celebrate her mother’s 91st birthday.

Reyer hopes the Sound Avenue farmhouse, which Scerri says she wants to renovate to accommodate about 10 youth and young adult TBI survivors, will be ready in time to allow Michael to transfer from Blythedale.

Friday, she was uncertain.

“There’s a lot to be done,” Reyer said, more than once, as she walked around the outside of the vacant house.

Scerri said New Beginnings has already submitted permit applications to Riverhead Town. An architect, Roger Smith of BBS Architects, has donated his services for the plans, she said. Companies, including national home improvement retailer Home Depot, have donated materials.

Scerri said she hopes to complete the extensive renovation with more donated materials and a lot of donated labor.

“Still,” she said, “we need to raise at least $200,000” to complete the work.

Reyer and her sister, Fran Johnson, of Riverhead, have set a goal of raising $16,000 for the new facility by Michael’s birthday on Aug. 16. They are asking for donations to Brendan’s House in Michael’s name. Checks can be mailed to: New Beginnings Community Center, 12 Platinum Court, Medford, NY 11763.

Besides cash to help with the renovation, New Beginnings is seeking volunteers to help clean and renovate the property.

“The Riverhead community has been amazing through it all,” Reyer said Friday. “I know people will step forward to help with this project. There’s such a need out there.”

To volunteer to help at the house or to obtain further information, call 631-286-6166.

New Beginnings is holding a fundraiser in Riverhead — coincidentally — on Aug. 16. It will take place at the Sea Star Ballroom of the Hyatt Place East End/Long Island Aquarium. The organization is a 501(c)(3) charitable organization. Its administrative staff are all unpaid volunteers, Scerri said.

“We’re all people who have been personally touched by TBI and have made it our mission to help other TBI victims and their families,” Scerri said.

Pourable fuel gel still being sold, still causing injuries {sidebar id=35}

The pourable gel fuel that exploded and injured Michael last year has seriously injured dozens of people and caused the deaths of at least two victims. The explosions occur when fuel gel is poured into a canister that is already lit or still hot. The gel itself burns — there is no wick — and the flame is not readily visible. When more gel is added to a hot or burning canister, a flash fire erupts, shooting flaming gel several feet through the air. Burn victims are typically bystanders two to six feet away from the canister.

The product was voluntarily pulled off retail shelves last June by its manufacturer, Napa Home & Garden, a Georgia company which then filed for bankruptcy. At that time, there were 23 known burn injuries. Nearly a half-million bottles of the pourable fuel gel had been sold or offered for sale by the company. By September, the Consumer Product Safety Commission knew of 65 incidents — resulting in two deaths and 34 victims who were hospitalized with second and third degree burns of the face, chest, hands, arms or legs.

Nine additional manufacturers and distributors of ethanol-based pourable gel fuels agreed to voluntarily recall their products, the CPSC announced last Sept. 1. Since December, the CPSC has been mulling a rule change that would ban the sale of such products nationwide. No decision has yet been reached and the federal rulemaking process is still in its earliest stage, according to a spokesman for the agency.

The pourable ethanol gel fuels are still being sold outside of Suffolk County — local legislators enacted “Michael’s Law” last year banning their sale here.

Similar accidents are still occurring.

On July 4, three people were seriously burned in Del Mar, Calif., when someone added fuel to an already-lit pot, thinking the fire had gone out. One woman suffered second and third degree burns to 50 percent of her body, according to news reports. Two other people, seated six feet away, were burned over 20 and 30 percent of their bodies. All three were hospitalized.