Kailyn is my 5 year old daughter. She has a rare genetic syndrome called Trichothiodystrophy. The impact of this syndrome is felt from the hair on her head to the tips of her toes. Kailyn wakes up blowing kisses each morning as she smiles and laughs at the simple joys in her life. Let's all resolve to be more like Kailyn.
Kailyn is not a stranger to BCH. She is followed by over a dozen specialists who work tirelessly to give Kailyn the best life possible. Her doctors display great empathy in their interactions with her, collaborate on creative solutions to complex problems, and offer balance in their advice when it seems there are no good solutions to be found.
The money we raise in this year's walk will be directed towards research programs. There is so much to be learned before children like Kailyn who face insurmountable odds every day are able to dream of a treatment or cure. We dream of the day when a family does not have to receive the heartbreaking news of their child's life limiting diagnosis. Until that day, we walk. We hope you'll support our efforts.