A Family Finds the Light Through Donor Support
Aldrin is a vibrant and spirited 15-year-old boy who radiates happiness and cheer wherever he goes. Known for his contagious smile, Aldrin’s sports coaches affectionately refer to him by the nickname “Smiley”. This is a nickname that Aldrin has remained as true to as ever throughout the past couple of years, during which he has faced a diagnosis that has altered both his life and ability to participate in many of the sports he loves. Despite facing challenges brought on by his newly diagnosed condition, Aldrin is showing his family and the world that his spirit knows no bounds through his unwavering pursuit of growth and new adventures.
“It’s helping his foot to be in place and not trip over the other. Since he’s had the AFOs, he doesn’t have any tripping or issues.”
The story of Aldrin’s diagnosis begins in September 2021, when Aldrin’s mother, Lean, first grew concerned about his increasingly frequent falls at school. “He could barely finish a whole week in school without the school calling me to pick him up,” shared Lean. In October, Aldrin’s mysterious falls had become such a common occurrence, that they decided it was time to go in search of answers. Lean and Aldrin sought medical attention, raising their concerns to doctors. Soon, an initial suspicion of cerebral palsy led them on a path of thorough testing and genetic analysis. It was in February 2022 when the weight of a diagnosis fell upon them: hereditary spastic paraplegia (HSP).
Aldrin was diagnosed more specifically with SPG 11, a complicated division of the condition. HSP is a rare condition, made even more uncommon by the unusually early onset of Aldrin’s symptoms, which typically do not begin until early adulthood. The diagnosis came as a shock to the entire family who were already facing the new and unfamiliar reality of living in a global pandemic, which had introduced immense financial and emotional strain into their daily lives. With Aldrin’s diagnosis, Lean became aware that she would now be caring for two young sons with disabilities, Aldrin and his younger brother, Adonil, who was born with trisomy 21 and diagnosed with down syndrome.
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For a family already struggling to make ends meet due to the pandemic and Lean scaling back work to care for Adonil, Aldrin’s diagnosis was a shock that exacerbated their current troubles and led Lean into a deeply painful and vulnerable place. She shared, “At that time, I felt so helpless. What can we do? We could barely cover the mortgage on the house. What more could possibly be added?” Luckily, through the guidance of one of Aldrin’s physiotherapists, Lean soon discovered the support that would give her the helping hand she needed at that moment. “At that point, I really felt like I have no bones in my body. And so when the physiotherapist mentioned that [Easter Seals] can help us with this, I really feel like that’s when one glimmer of light shone on me.” Lean recalls being surprised that Easter Seals, which also supports their family with the cost of Adonil’s incontinence supplies through the Top Up Grant, offered support for equipment. “I was really surprised. Like they can help us with the equipment as well? I was just way beyond surprised and grateful that okay, Easter Seals can help us as well,” said Lean.
As Aldrin’s condition progresses, he faces challenges with walking and balance, but with the support from Easter Seals, Aldrin now has the ankle foot orthotics (AFOs) he needs to continue walking on his own without the constant fear of falling. Lean shared the difference that the AFOs have made for Aldrin, “It’s helping his foot to be in place and not trip over the other. Since he’s had the AFOs, he doesn’t have any tripping or issues.” Though Aldrin’s condition has made it necessary for him to adjust his life, discontinuing his participation in sports he loves such as basketball and soccer, he is determined to fill his world with new and exciting hobbies and adventures. Driven to keep his life as full and vibrant as ever, Aldrin has made it his mission to immerse himself in as many new activities as he can, from swimming to chess club and even his school band!
“I really feel that the first light that I saw and how I started to see a way out of this was knowing that Easter Seals was able to help us. So like I really feel that Easter Seals is the one that pulled me up and showed me that there’s light.”
For Lean and her family, the impact of the support from Easter Seals goes far beyond equipment or financial assistance. It represents a lifeline, a glimmer of hope that fuels their spirits, reminding them they are not alone. “It’s not just the monetary help that I received from Easter Seals, it’s more of that. Thinking that ‘okay, they’re there’, you know. Because I really felt that that’s where I started to pick myself up. So, it’s not just Aldrin that they help. It’s also me,” Lean shared. “With the support, I’m just thankful now that I feel like I’ve found the first step out of the darkness. I went through a really dark stage, and I really feel that the first light that I saw and how I started to see a way out of this was knowing that Easter Seals was able to help us. So like I really feel that Easter Seals is the one that pulled me up and showed me that there’s light.” Lean expresses both her and her family’s gratitude for the donors who make it possible for Easter Seals to offer support to her family and others facing similar challenges,” I just really wish I could thank them in person, if I will have the chance to be able to thank each and every donor, in person, I will really do so. From the bottom of our hearts on behalf of my whole family, I am really, really thankful to all the donors of Easter Seals, and to the whole organization.”
The story of Lean and her family’s journey stands as a testament to the power of community and serves as a reminder of the incredible impact Easter Seals donors can have on both the lives of the children we serve and those of their families.