Oliver is diagnosed with Spinal Muscular Atrophy with Respiratory Distress (SMARD) and Scoliosis. SMARD is a rare neuromuscular disease that affects muscle tone all over the body, typically presenting first as respiratory distress as the diaphragm weakens or is paralyzed. The timeline of SMARD onset varies, although it usually presents within the first 6 months of life. The severity also varies. Ollie is relatively strong for his diagnosis, and has only continued to gain strength and improve his mobility. He has a trach and is ventilated 24/7, but figures out how to get around even with the extra accessories.
Ollie is a hilarious and independent 5 year old boy, who also has a rare neuromuscular disease. SMARD (spinal muscular atrophy with respiratory distress) affects his muscle tone, which caused him to need a tracheostomy and ventilator at 4 months old. Ollie hasn’t let that stop him, though. He continues to grow and get stronger; he can now walk short distances without the help of his gait trainer.
Ollie loves spending time outside with his family. He is always trying to keep up with his sister and the kids on our street. Having a big kid bike would help him do that, and be great for improving his strength and independence.
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