Jason Kraft, the owner of Electric Bike Technologies, has brightened the lives of two sisters with two electronic tricycles that are typically made for senior citizens. Maggie and Charlie Monnin, who are nine and eight respectively, live with spinal muscular atrophy (SMA), making it difficult for them to participate in activities with other children, like biking. With these special tricycle, the sisters are now able to join in on the fun.
About Spinal Muscular Atrophy (SMA)
Spinal muscular atrophy (SMA) is rare genetic order that is characterized by muscle weakness and degeneration. It affects one in every 10,000 people but can vary in severity from person to person. A mutation in the SMN1 causes this condition, and it causes the loss of motor neurons in the spinal cord and brain stem. Due to this loss, muscles weaken and atrophy, specifically the muscles used for walking, breathing, swallowing, crawling, sitting up, and moving the head.
The symptoms of this condition depend on the severity and type of SMA.
- Type I is the most severe, and is diagnosed after birth. The symptoms of this type include developmental delay, the inability to sit up or move the head, and trouble with breathing and swallowing.
- Type II is diagnosed in children between six and twelve months old, and they experience trouble with standing and walking.
- Those who have type III are diagnosed between early childhood and adolescence and cannot walk or climb stairs independently.
- Type IV occurs in adults over 30 and is the least severe type. People with this form of SMA usually have mild muscle weakness, problems with breathing, twitches, or tremors.
Once these symptoms are noticed, a diagnosis is confirmed through neurological examination and genetic testing. While there is no cure for SMA, there are treatments available. Physical therapy, braces, and surgery can all help to improve movement. Noninvasive respiratory support and tracheostomies can address issues with breathing while gastrostomy can help with eating. Spinraza is the first FDA approved treatment for SMA, and Zolgensma and Evrysdi have also recently been approved.
Bikes for Maggie and Charlie
Jason Kraft typically makes his motorized tricycles for senior citizens, but he has recently been gifting them to children with SMA. Originally, he was contacted by the mother of an SMA patient, Alison. She was on the search for a bike that her daughter could ride without reaching exhaustion.
Kraft stated that once he saw Alison on her test drive, he knew that the bike was for her and gave it to her for free. From this point forward, he knew that he had to provide the same happiness that comes with a bicycle to other children with the neurodegenerative condition. For the remainder of 2020, he gifted ten more bikes.
Maggie and Charlie have been on a wait list for two years, waiting to receive a pair of the motorized bikes. They are so excited after finally receiving them and took them out for a spin immediately. The two sisters cannot wait to ride their bikes around the neighborhood with friends and have some fun.
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