My mother, Josefina, was diagnosed with corticobasal ganglionic degeneration (CBGD or CBD) in November of 2016. This March, she will turn 64. Her symptoms, however, began to present in her late 50s. This disease has slowly taken away her mobility, her speech, and her independence. This disease is rare affecting only about 5-6 in 100,000 people, and supportive resources are limited.

I wanted to to bring awareness to this terrible disease, so for my birthday earlier this year, I chose to raise money for Miracle For Mom through a FaceBook-based fundraiser. MFM is a non-profit organization that supports individuals and families affected by rare brain diseases. Within a week, we raised $895. I was truly amazed and humbled by the amazing response from family, friends, and friends of friends.

MFM was able to provide my mom with a reclining wheelchair. Because of her CBD, my mom has difficulty holding her head up. My dad had placed an old cookie sheet padded with a towel behind the backrest of her old wheelchair to help keep her head up. In her new chair, her head is supported, and she can also fully recline back as well. Something like this may not mean much to some, but this wheelchair has been so helpful not only for my dad who is her full-time caregiver, but for my mom’s quality of life as well.

On behalf of my family, I would like to thank Miracle For Mom for the work they are doing for those affected by debilitating brain diseases.

Sincerely,

Johanna Littlejohn