“We avoid birthday parties and other events where we see ‘normal’ children playing,” Marcela Flores wrote to us. “I see it in his eyes. The look in his eyes, that disappointing look that brings nothing but anguish and despair. I feel for my son.”
Marcela’s son Joshua was born healthy and lived a typical happy life alongside his two older siblings, Carissa and Elijah. However, when Joshua was a child his health seemed to suddenly deteriorate without explanation. Joshua went from a happy-go-lucky child with endless energy to a wheelchair-bound kid who was progressively—and mysteriously—getting worse.
“I watched Joshie run around after his older brother. I saw Joshie hop, skip and jump,” Marcela heartbreakingly remembers. “I saw him feed himself and heard his sweet voice singing his favorite tunes to me. I saw it for myself! He has been has robbed of his dignity, health and a chance at life that many take for granted.”
After many visits to various doctors, some tests finally revealed that Joshua was suffering from a condition known as Leukodystrophy, which is a neuro-degenerative disorder that affects the white matter in the brain. Basically, his once perfectly functioning brain was losing all the connections and pathways it had worked so hard to create.
Specifically, Leukodystrophy damages the brain’s myelin sheath, which acts as an insulator around nerve fibers in the brain and spinal cord. Damage to the myelin sheath slows down or blocks messages between the brain and the rest of the body and can cause problems with movement, speaking, vision, hearing, as well as mental and physical development.
“Through all of this pain and suffering, let me tell you how special Joshie is, as this little boy has a gift and reverence for life,” Marcela proudly tells us.
“He never complains about getting up early or having to go to therapy. He works so hard. He never complains when he can’t do things like play in the playground or run around with his brother at the beach,” Marcela tells us. “He is always worried about me and my husband, and constantly apologizes to me because of the back pain that I feel from lifting him. As if any of this was his fault!”
Obviously, if you’ve made it this far you know how special Joshua and his family are which is why we were so excited to help them with their request for a custom bathchair after insurance denied them of this important piece of durable medical equipment. Thanks, as always, to our donors Holton’s Heroes was able to gift Joshua the expensive and versatile bathchair made by Rifton.
After receiving the chair, Marcela wrote us this beautiful message: “Tonight, we feel the power of humanity in a bath chair. Go figure. Some people feel excited about cars and other luxuries, but here I am just wanting my boy to be bathed safely.”
“People like you and your donors make the world a better place. Thank you.”
Check out some of our other heroes from this year
“Tonight, we feel the power of humanity in a bath chair. Go figure. Some people feel excited about cars and other luxuries, but here I am just wanting my boy to be bathed safely,” Joshua mom wrote to us after her son received his gift from Holton’s Heroes.