For as long as he has been alive, Highlands Ranch 14-year-old Adam Encrapera has been challenged by Alstrom syndrome, a disorder that affects every organ in his body with the exception of his brain.
One of just 500 people in the world diagnosed with the disorder, Adam has gone through numerous battles in his lifetime. He was declared legally blind at a young age and lost all his hearing by age 9. He has struggled with kidney issues, heart complications and diabetes.
But ask his mother, Susan Encrapera, and she will tell you that “intellectually, he’s pretty normal,” and per the physical challenges? “He rolls with the punches.”
Being confined to a wheelchair for the past 2½ years has made life all the more difficult for Adam, who in that time frame has had multiple back surgeries and been forced to move his bedroom from upstairs to the family’s formal living room.
Aside from having to set aside physical activities such as adaptive baseball, parasailing, horse riding and adaptive ice hockey, Adam was subjected to a type of sleep disorder that made it appear he was having seizures, and the family was forced into more than 15 trips to the emergency room in the last three years.
Susan said they had to call emergency responders to help with him, because there was no adaptive wheelchair ramp at the house, Adam, weighing 200 pounds and standing a proud 5-foot-11, was too much for his parents to carry.
Enter the Home Builders Foundation, a metro Denver-area nonprofit that partners with the homebuilding industry to provide home modifications at no cost for individuals with physical disabilities and financial need
On Aug. 23, as part of a three-day “Blitz Build,” the foundation sent 100 volunteers to 13 homes in the metro area, including Adam’s. At each home they built a ramp, as in Adam’s case, or made modifications in the bathroom to make life easier for someone with a disability.
“Having access to your home is not something you think about until you have to think about it,” said HBF executive director Beth Forbes. “Being part of all the different site visits you really see how difficult it can be to get in and out of the home and (around) one’s bathroom. It’s rewarding to see the quality of life eased from start to finish.”
Adam, an eighth-grader at Cresthill Middle School, was in school while the construction was going on, but Susan said he is extremely grateful for all the help.
“We had called the state about getting help with home modifications but he doesn’t qualify, because his IQ is too high. He doesn’t have a developmental disability,” Susan said. “A friend told us about Home Builders and they have been just wonderful.”
To learn more about HBF or to volunteer, visit www.hbfdenver.org. HBF is always seeking skilled and non-skilled volunteers to help out with projects.