Suffolk Family Raises $9K For Angela's House In Brother's Memory

Find out what's happening in Northportfor free with the latest updates from Patch.

Dec. 20 marks 10 years since the family lost Jake.

“He was able to outlive his life expectancy by years, which we like to credit to the unwavering love and support from his family, friends, unforgettable nurses, and over the top care that Angela’s House provided,” his siblings wrote.

Jake was diagnosed at a young age with a very rare genetic disease called infantile neuroaxonal dystrophy, his siblings said.

While Jake was younger, he was able to walk and talk and was “very strong and funny,” Julia told Patch.

“He had a big personality, always with a smile on his face,” she said. “As he got older his disability caused him to regress from this state where he was no longer able to walk or talk. Although Jake was unable to walk or talk, he still held onto this big personality. When I would walk in his room and say something crazy, he would roll his eyes — he kept me in check — or when I would go in and read him a story he would act very relaxed. He had these big green eyes and through them you could tell exactly what he was thinking, he made sure of it.”

Jake was “such a special part” of his family’s lives, Ricky said.

“When he was little, he was just like any other toddler — crawling, laughing, and full of energy,” Ricky said. “His favorite show was ‘Clifford the Big Red Dog,’ and he’d burst into laughter the second we turned it on.”

By the time Jake was 4, he lost his abilities to walk and balance and became completely confined to a wheelchair, Ricky said.

“Even though he faced so many challenges, Jake’s personality never changed,” Ricky said. “He had a way of letting you know he was aware of your presence the moment you walked into a room. He expressed happiness with sounds resembling laughter, and at other times you could see a tear come down his face. Despite everything, we always knew Jake felt our presence and that we were right there beside him. Jake’s spirit was incredible, and he left a mark on everyone lucky enough to know him.”

Throughout Jake’s life, Angela’s House helped the Spadalik family by providing the equipment and care needed in their home to support him. Eventually, Jake was given the opportunity to move into one of the homes that Angela’s House built, where they provided around-the-clock care to him, his family said.

“This took a huge weight off us, and our parents, knowing that he was constantly getting the best care he could,” Julia and Ricky said. “We were able to throw family parties and participate in the fun events they would have for the children and their families at the home, which became, and still is, our second home. We could not thank them enough for how welcoming and caring they were towards our family, friends, and most importantly, Jake. And we also thank Jake for introducing us to some of the most amazing people, and this great cause.”

Julia and Ricky said they would like to give back to Angela’s House with a “generous holiday gift.” All money raised will go towards Angela’s House to help other children and their families with the care and support they need.

“Any amount donated is greatly appreciated by our family and the Angela’s House community!” the Spadaliks wrote.

Julia said giving back to Angela’s House is “so rewarding.”

“I have never seen an organization do everything it is that they do,” she said.

Julia was only 11 when Jake left home to live in an Angela’s House location. She was devastated at first, she said.

“It wasn’t until he moved in that I realized this was the best decision my parents could have made for him,” she said. “My mom would pick Ricky and I up from school all the time and we would go over to Angela’s House which inevitably became our second home. While Jake lived at home with us, he had a nurse named Michelle — who also became family — who cared for him every day, and Jake was so comfortable with her. Angela’s House even hired her to work in the home when Jake moved in because they knew how much he needed her. Simply explaining what Angela’s House does as an organization doesn’t give it justice to how extraordinarily they treat the children and their families. They let these families feel seen and heard when sometimes they feel they aren’t being understood. With that being said, giving back to an organization that does all of that on top of medical care for the children is amazing, and doing anything I can to spread the word and raise awareness for them is the greatest feeling.”

Julia said she is in disbelief that there is an organization like Angela’s House that does so much for medically fragile children. She said it deserves “all the praise in the world.”

“I am so grateful to have had an amazing brother like Jake who taught me some of my most valuable life lessons … seriously never judge a book by its cover,” she said. “Jake introduced us to some incredible people and Angela’s House, and I would never trade any of it for another experience.”

Ricky said talking about Jake was a difficult topic for many years.

“Losing him at such a young age was an experience few people around me could relate to, which made it hard to open up,” Ricky said. “As a result, I often kept my emotions bottled up, which only made grieving more difficult. Recently, however, I’ve started to open up about my brother more, and I’m proud to raise money for Angela’s House while sharing the meaningful experiences he had there. Although this topic used to upset me, it now makes me happy to talk about him. My brother taught me an important lesson that every life, regardless of appearances or abilities, has value and significance. Without the support of Angela’s House, my brother likely wouldn’t have lived as long as he did. I am deeply grateful for the extra time they gave us together, and I am honored to give back to this incredible organization in any way I can.”

Angela’s House has three homes across Long Island where children needing extensive care can live their life comfortably. They also help families by providing them medical supplies, assistive technology, home modifications, counseling, advocacy, crisis assistance, and other resources for their medically fragile children.

People can learn more on the Angela’s House website.

Get more local news delivered straight to your inbox. Sign up for free Patch newsletters and alerts.