Her name is Katie and she was diagnosed early on with CDKL. This is what her mom says on her Facebook page:
"Katherine has CDKL5 is a rare X-linked genetic disorder that results in early onset, difficult to control seizures, and severe neuro-developmental impairment. Most children affected by CDKL5 suffer from seizures that begin in the first few months of life. Most cannot walk, talk or feed themselves, and many are confined wheelchairs, dependent on others for everything. Many also suffer with scoliosis, visual impairment, sensory issues and various gastrointestinal difficulties. Katie has also been diagnosed with West Syndrome, refractory epilepsy, global developmental delay, hypotonia with multiple joint laxity, mitochondrial dysfunction, strabismus, she wears AFOs and the sweetest disposition you will ever meet! Katherine is the youngest of 4 children. Our lucky Princess has 3 older brothers who absolutely love her!"
Isn't she precious??!!
Her mom posted on her Facebook page that they found a special bike for Katie but they still need at least 8 more people to sign up for her virtual race in order to purchase the bike for her.
I would love to be able to help her buy her bike and I'm hoping some of my readers can do the same!
Here's her Facebook link and post:
Spring has arrived in Maine! Horray! We found an amazing bike that can be adapted for Katie and she could be like the big kids! We need 8 more people to join us on Katie's Virtual Run and she can have it! We are so thankful for those who have already signed up for her run and would love to see pics!
Katie's Hope Donations for the medals are being accepted through PayPal at firstname.lastname@example.org.
Please check the "Friends and Family" option.
The minimum donation for a medal is $25.
Please include your full shipping address in the message area!
As with any virtual run, you get to pick the time and place to do it.
Even if you don't want to do a virtual race or get a medal, would you at least consider making a small donation to Katie's bike?
What child doesn't want to enjoy riding a bike in the spring time?