Kathleen Twible via Crowdrise
November 15, 2011
BENEFITING: EB Research Partnership
ORGANIZER: EB Research Partnership
EVENT: NYC Half 2012
EVENT DATE: Mar 18, 2012
Dear Family and Friends,
On Sunday, March 18, 2012, I will be running the NYC Half Marathon in honor of my son Robert John Twible. I will be a member of the Jackson Gabriel Silver Foundation team. My friends Alex and Jamie are proud parents of Jackson who, like Robert, suffers from Epidermolysis Bullosa. They have established this non for profit organization determined to find a cure for this devastating disease. They have given our family so much hope as progress is being made. I am honored to be apart of this team and raise funds solely for the purpose of research.
Robert suffers everyday from EB. He often wakes up in the middle of the night in pain from blistering and the lack of skin on his legs. He endures a two hour bath and bandage change everyday in order to prevent infection. Moving from place to place is a challenge that he must face everyday. Everyday things such as putting on clothes and zippering a jacket are difficult for him. Eating is also difficult and to aid in his nutrition he is hooked up to a feeding tube every night. Definitely not things that are typical in the life of a nine year old boy.
With all that he goes through, Robert continues to fight the fight. He gets up for school everyday, puts on his sneakers and gets on the bus. He is a smart boy who loves to sing and to perform on stage. I am in awe of him. He is in pain and rarely lets you know it. He loves to make people laugh and makes me smile everyday. I am honored to be his mother.
Please join me in an effort to find a cure for Robert. He is my life and I run so that one day he will walk without bandages on his legs and blisters on his feet. With your help I know that we will be closer to a cure!!!