In April 2019, Quinn, was diagnosed with Charcot Marie Tooth (CMT1B). Currently, there are no treatments and there is no cure for CMT. With your help, I want to raise money to go toward research to develop treatment and find a cure for this progressive, painful, and debilitating disease.

Our Story:

Quinn has experienced gross motor delays since infancy. We began searching for answers when she was about 9 months old. It took a year of meeting with neurologists and neuromuscular specialists before her diagnosis. 

Nothing could have prepared us for her diagnosis in April 2019. They sat us down and told us that Quinn has Charcot Marie Tooth (CMT1B), a progressive genetic disease of the peripheral nerves that control the muscles. A disease with NO CURE and NO TREATMENT.

Needless to say, we were crushed and felt completely helpless. And, although CMT is generally hereditary, we had never heard of it and have no family history of the disease.

So how does CMT affect her body? Quinn's type of CMT affects the myelin sheath that surrounds the nerves and the sheath is like the insulation around an electrical wire allowing the electricity to flow through. So when the sheath isn't as it should be, the nerves cannot function normally. Quinn has severe infantile onset CMT. This means her body has to work harder to compensate for the weakened muscles and the nerves can cause constant and severe pain. And because this is a progressive disease, it will continue to get worse over time. It often leads to foot deformities and sensory loss.

CMT has had a major impact on Quinn's gross motor development, particularly her lower legs and feet. Her doctors were not sure whether she would ever walk but they set us up with physical therapy and medical devices that would help strengthen her muscles. Without a cure or treatment, this the only thing we can do for Quinn — is to keep her muscles healthy to try and delay the progression of the disease.

She uses leg braces (called AFOs) and a walker to get around. She works so hard with physical therapy and sheer grit to keep up with her big sisters. She is one determined little girl who has already inspired so many, particularly within the CMT community.

Quinn loves playing with her big sisters, Juliana, Eliza, and Chloe; playing with friends; going for walks; and especially swimming. 

We look forward to watching her grow. We look forward to helping her in any way we can to overcome her challenges and lead a very full life, one worthy of her sunshiny spirit and big personality.

AND we look forward to finding a cure for CMT! Please help us do this. Every donation helps and absolutely means the world to us. Thank you!