This is Ruby! She is a Rare Ruby. She was diagnosed with a rare form of Leukodystrophy called H-ABC. There are less than 100 people diagnosed with this neurodegenerative, debilitating brain disorder. She was only 16 months old. Since then, we’ve been trying to spread awareness like wildfire. We made her Facebook page, bracelets, t-shirts, and we entered Ruby into a beauty pageant! We stay busy in other ways too, like her 5-6 appointments every week! Participating in research at CHOP is also a hobby of ours! Ruby faces many challenges daily, but we never miss an opportunity to inspire, educate, and support others! With a smile on her face and a giant support group in her corner, there’s nothing she can’t do! Meet A Rare Ruby, Miss Spirit, and Tiny Toddler Miss Pennsylvania, a true fighter!
We hope you and your family can be our special VIP guests at the Cupcake Challenge on Saturday, September 16th. We would love to meet Ruby and see how we can support you guys. Lots of great families attend.