We are so excited!! Madison really likes to walk. Boston Children's Hospital hosts a fundraiser each year that is a 2 or 6 mile walk. However, it had to be canceled and so they gave us the option of walking anywhere we wanted to. We chose the the stunning Glimmerglass State Park in Springfield, NY, with its beautiful beach, to be the place where she walked.
I'm unable to do any of the walking with her but I'm incredibly proud of how much she walked for this event.
We are very partial to Boston Children's Hospital in Boston, Massachusetts because it has a program called Roya Kabuki. The program encourages physicians to treat as many individuals with Kabuki as they can, thus becoming "champions" for Kabuki Syndrome. Through the program, they gain knowledge and experience of this disorder. The syndrome is very rare so as it is important to have specialists that understand it. They have a groundbreaking research program as well.
We are raising money for the program but we can't do it alone. Please consider even a small donation to help with the care of these wonderful warrior kids. Presently, in our "Kabuki family" we have at least one individual in ICU, 2 in hospitals, and one in hospice.
I hope you'll consider supporting the Roya Kabuki Program through Boston Children's Hospital.
The fundraiser ends June 14th.