Mountain Shadows Resident of Hope: Luca
by Sheryl Wilde
While many would say Luca faces insurmountable odds, his Grandpa Bill says, “Luca never gives up. He has such determination. He taught me to never give up.”
“We were there when Luca was born,” adds JoAnne, his grandmother. “He spent months in NICU. He had so many problems – problems with his kidneys, with swallowing, with sucking, he was missing part of his brain. But, unless he was really hurting, he was always so cheerful.
“Luca is 11 years old now, but he is between 12 to 18 months old in terms of cognitive ability. He can’t walk or feed himself. He can’t talk or bathe himself. He’s in diapers. He’s had problems with his ears and eyes. He’s had one medical problem after another. He’s also had several shunt surgeries.”
Adam, Luca’s father, adds, “Luca was constantly in and out of the hospital during his early years. That picture of him in bed (above), with his arm wrapped up, the IV’s, the bandage on his head – and, even with all of that, he’s grinning, with that little spirit of his. That’s Luca.”
“Luca was born with an extremely rare genetic syndrome, Coffin-Siris syndrome,” explains Luca’s mother, Nicole. “He requires 24-hour nursing care, along with developmental stimulation, and care like physical therapy, occupational therapy and speech therapy, to help him develop to his full capacity.
“We cared for him in our home as long as we could, until he was 10 years old, but eventually had to accept the painful reality that we could not meet his needs at home.”
“Taking care of Luca was an enormous challenge for his parents,” says JoAnne. “They did everything for him. They lived in crisis mode for 10 years. It came to a point where Luca was too big for them to take care of. My daughter couldn’t lift him in and out of the bathtub.”
Despite all the difficulties he’s faced, Luca has remained a beacon of joy to those who take care of him.
“When Luca puts his hands under his chin like in that picture, it means he’s over the moon happy!” says Nicole. “He loves the water. He took swimming lessons when he was younger, and he loved it. As he got bigger, we kept wanting to get him back into swimming lessons, but due to his size and abilities, we just couldn’t pull it off.”
Once Luca moved to Mountain Shadows, he was able to join the Star Fish program, an adaptive swimming class. Says Kathy Elias, former Assistant Director of the program, “Luca loved the water! He was always the last one out. He was always smiling. He could kick and splash. Swimming improved his range of motion and loosened his muscles. The water is also very calming. Water does amazing things for the disabled. It changes a lot of lives!”
While Luca is happy now at Mountain Shadows, the decision to move him to a new home wasn’t easy. Says Adam, “We gradually came to terms emotionally that we couldn’t care for Luca at home. We looked at places for a long time. It took us a long time to adjust to the idea.”
Adds Nicole, “We searched all over San Diego and eventually Riverside counties for nearly two years for a place that could address all of Luca’s needs.
“In our search, we learned how incredibly special Mountain Shadows’ family-style ICF-DDN homes are; most homes could help Luca with either his medical needs OR his developmental needs, but not both.
“It has been such an incredible relief and inspiration to see how well Mountain Shadows has been able to serve all of his needs, along with providing him a loving, safe environment in which he is thriving to his full potential as an integrated community member.”
“Luca has been happy at Mountain Shadows since the moment he arrived,” says JoAnne. “It’s also been a lifesaver for his parents.
“Mountain Shadows has given Luca more freedom – a wonderful freedom to be what he can be. Mountain Shadows also gives Luca a consistent structure in which he thrives.”
Grandpa Bill concurs, “We’re incredibly impressed with Mountain Shadows. It’s the perfect place for him to continue to enjoy his life.”
“While Luca is happy now at Mountain Shadows, we remember the difficult time,” admits Adam. “It was 10 years of huge crisis for us. Was there personal growth for me? I don’t know.
“But one thing that is striking to me is that Luca has elicited from everyone a warm and engaging reaction. I think through the combination of his being non-verbal and severely disabled, people develop an emotional connection with him. All those who work with him, the nurses, the therapists – he touches all their lives. They all carry around a little bit of him.
“For a long time, we couldn’t see the end of the constant crisis. But the horizon has changed thanks to Mountain Shadows.
”When you donate to Mountain Shadows Foundation,
you help advance the programs and services of
Mountain Shadows Support Group and Mountain Shadows Ancillary Services,
and help individuals with intellectual disabilities thrive.