Katie Bustamante’s son, Alex, was diagnosed with Acute Flaccid Myelitis at the age of five. Tragically, he passed away from complications of this disorder. In loving memory of Alex, Katie started a giving fund which raised over $8,000 in support of research of rare neuro-immune disorders. Our thoughts and condolences are with Katie and her family as they mourn the loss of their loved one.
By Katie Bustamante
On May 20, 2018 we lost our beloved Alex. Alex was a sweet and loving six-year-old boy that enjoyed life to the fullest. He was a firecracker with incredible strength.
For the last year and a half, Alex had been fighting a rare condition known as AFM. The illness attacked his spinal cord on December 24, 2016. Within a week, he had become dependent on a ventilator for breathing, and his heart had been severely weakened from the stress of the condition. He also suffered from upper body paralysis. Despite these devastating physical challenges, Alex never lost his spiritual strength.
He loved to sing and found joy and beauty everywhere. He loved baking, insisting that every cupcake or cookie had to have sprinkles. In a lovely paradox, he also adored the garbage trucks, particularly recycling. He always wanted to own his own bakery and be a garbage man, agreeing that he should do the baking before the garbage pick-up due to hygienic reasons. He enjoyed reciting the names of those he loved on a regular basis. The list was endless and he was always genuinely thankful for the people in his life. Alex adored animals from the day he was born and always named Friday (the dog), Annie (the cat) and the numerous fish we managed to acquire when he listed his loved ones. He loved dancing and snuggling. He loved dressing up and playing pretend. He appreciated every positive thing that the world had to offer.
The loss that our family and friends have endured is indescribably painful. Alex was a champion of strength and an amazingly fun person to be with. The world is not the same without him, but we hope that he now has the freedom to embrace his dreams and become everything that he was meant to be. We miss you Alex – Our snuggle bunny, our fighter, our friend, our singer, our boss and everything we needed in this world. We love you Alex! Always and forever.