Battling Tay-Sachs Disease
Tay-Sachs is a rare genetic disorder that affects young children. With time, a child’s development slows and their muscles begin to weaken. Children with Tay-Sachs disease experience seizures, vision and hearing loss, paralysis, and other major issues.
Beautiful Heart learned of Oliver’s Tay-Sachs diagnosis in 2019 and was quickly overcome by the Johanson’s story. Beautiful Heart reached out to see how we could best support Ollie and if there was anything that would lighten their load during this difficult battle. A trip to the beach was what Ollie’s parents thought would be most beneficial. Here are their words about the experience:
“Oliver LOVES being outside more than just about anything else. Since we have to be extra careful with keeping his lungs healthy and we live somewhere so dang cold, he hasn’t been outside for more than a minute or two since September. We know he misses it. We have been wanting to find a way to get him somewhere warm for a weekend, but it has been hard to figure out how we would make it all come together. He is too young to qualify for the Make-A-Wish program. Last week, [Beautiful Heart] sent us to Miami for three days on the beach!! We were beyond touched by their generosity and thoughtfulness.
This trip was huge for Ollie and he was more content and relaxed than we have seen him in months, which was priceless to us. His breathing was so much less labored than normal and he didn't have a single seizure on the trip! This was so much bigger than a few days in the sun. We were gifted some precious memories and time together where we could see Ollie really decompressing and soaking it up. It was the perfect way to celebrate reaching 18 months with such an awesome little dude! There aren’t words for how much it meant to us to see him feel some relief. Thank you a million times over for Ollie’s Sunshine Trip.”
Oliver passed away in September 2020 after a long decline battling Tay-Sachs disease. Beautiful Heart was honored to be part of this experience for sweet Ollie.
