CHARLESTON, W.Va. -- Collin Huff was born a Christmas baby 21 years ago, but also one with challenges: a genetic disorder has the Harrison County resident coping with various ailments, including a severe blood pressure disease that impairs his breathing and increasingly requires him to rely on a ventilator.
And while Tuesday brought him DVDs, clothes and other welcome birthday/Christmas gifts from loved ones -- "He got quite a bit of stuff,'' said his father, Michael Huff -- turning 21 also means he no longer qualifies for in-home nursing care through the Medicaid program.
"We're pretty much up against the wall,'' said his mother, Lora Ashcraft. "We're going to be very dependent on family and friends.''
Collin Huff divides his time between the separate residences of his mother and of his father and his wife. Medicaid has helped provide skilled nursing services such as at night, when he usually hooks up to his ventilator. His parents say they can't afford that in-home care on their own. The remaining options include a nursing home, but Michael Huff said no nearby facility has a ventilator bed available. Collin Huff would have to go to a nursing home out of state.
But Huff's family is trying to keep him home. His health is declining. He was diagnosed with chronic liver disease last week, each parent said. Both that organ and his spleen, which filters blood and is important for the body's immune system, are swelling with fluid. He's lost his mobility over the course of the year.
"He just sits around in his chair [or] the couch, and has us carry him around,'' said his father. "He's too weak to push the wheelchair by himself.''
Huff's family has applied for a waiver from Medicaid rules so he can continue to receive in-home services. West Virginia's waiver program actually reduces the cost of such care, according to lawmakers who have repeatedly sparred with state Health and Human Resources officials over the limited number of waiver slots.
"It could take up to two years, they say,'' the elder Huff said. "He's on the list right now, and I was told he was 332nd on the list.''
Administration officials did not respond to requests for comment Wednesday. Several legislators in Huff's area attended a Sunday press conference in Bridgeport meant to bring light to his case. Another family seeking help continuing Medicaid services, for a 38-year-old with an irreversible muscular disorder who also relies on a ventilator, also took part in the press conference.
Collin Huff has mental as well as physical disabilities. His mother described some of his favorite gifts received Tuesday: a laughing Elmo doll, and stuffed versions of the children's TV characters Peppa Pig and Pocoyo."This child has received more love in his life than most of us can hope to,'' Ashcraft said. "He's just so capable of bringing people together, and that's what we're hoping will happen now.''