Logan has 5p- syndrome. The syndrome is caused by a missing part of the “p” arm of the fifth chromosome. It is a spectrum genetic disorder, depending on the location and size of the deletion. Logan is moderately to severely affected. He has global developmental delays, is non-verbal, unable to stand without assistance or walk. Along with his diagnosis, he was a very premature baby, born at 29 weeks. He was on oxygen for the first 1.5 years of his life and has relied on a feeding tube for nutritional needs since birth.
Recently Variety KC received a request for an adaptive bike from Logan’s mother. Her honest and heartfelt description of Logan is worth sharing.
Logan is the funniest, quirkiest, stubbornest toddler. His diagnosis is 5p- syndrome and he was also born at 29 weeks. Initially it was tough – I thought the world had ended. I quickly realized it was all the things that made him so unique that I loved the most.
From the first couple of weeks in the NICU, Logan has had the best Physical and Occupational Therapists. I was given a masterclass in helping him with sensory stimulation, mobility, and development. Since then I, and all his caretakers and practitioners, keep focused on helping Logan reach his milestones. Sometimes it can seem slow-going, like watching molasses, but when Logan unlocks a new skill it is an absolute joy!
Strangers might not recognize Logan’s curiosity and drive to do new things because of his limitations. I can see it in his funny little facial expressions and his hilarious noises. When he finds something he loves doing, it’s all worthwhile. And that is why his PT recommended the Variety Mobility Application to us. We’ve had great success with the bikes at Britain Development Center and in Logan’s therapy. I often comment on how I wish we could take one home. It stimulates reciprocal movement in Logan’s legs, and it’s one of the few things Logan will maintain grip with each hand on the handlebars. And it keeps him engaged and makes him smile.
Organizations such as Variety are so important and its gives families like ours an opportunity to help our little ones reach their maximum potential. I thought so many things were lost with Logan’s diagnosis – like Logan riding a bike. Every time he’s on one and enjoying himself it makes my heart sing. Thank you!
Variety partners and donors believe every child should ride a bike, even the quirky and stubborn ones 🙂 If you can help a child get out and riding, please donate today at VarietyKC.org/donate. Thank you!