David's run for the NODCC

Tonight I am so proud - David is running the Boston Marathon on April 19th and running as a fundraiser for the NODCC. His letter is so touching - see a father's love below. This is a coming out-party for our family in a way -we've decided that it is in Taylor's best interest and our family, to help people learn about her condition. As time goes by, her delays become more apparent and education is valuable. We also see this as building Taylor's team - the more people cheering for her from the sidelines the better.

March 18, 2010

Dear Family and Friends,

On April 19th, I will be running in the 114th Boston Marathon. After qualifying for this prestigious event in June I have decided to make each mile make a difference for a cause that is so important to the Gurry family. I am running in order to raise money for the National Organization for Disorders of the Corpus Callosum (NODCC).

I am asking friends and family to consider sponsoring me for this event. I have two ambitious goals – first to complete the most famed marathon in the world without sustaining any bodily harm and second to meet my personal goal of raising money for the NODCC. I would greatly appreciate your kind consideration by making a donation toward this goal. All donations are, of course, tax deductible.

As many of you know, this is a personal cause for me. Many of you may be more aware than others as to the degree our lives changed eighteen months ago when our youngest daughter, Taylor, was diagnosed with a Disorder of the Corpus Callosum (DCC), a prevalent but still relatively unknown brain disorder. Simply put, Taylor has no Corpus Callosum (complete agenesis of the Corpus Callosum), the part of our brain that connects the right side to the left side of the brain. People without a Corpus Callosum experience moderate to severe learning delays, social, behavioral and other medical challenges. Taylor has significant developmental delays and has some medical challenges but is making great progress. At 2 ½ Taylor can sit un-assisted, maneuver into sitting from lying down, play with toys, starting to learn some sign language, etc. While she is not crawling, walking, or talking we are hopeful. Taylor is the hardest working 2 ½ year old in town. All of the great advances that Taylor has made are a result of 4 days of therapy a week along with three weekly sessions at the Experimental Education Unit at the University of Washington (our youngest little Husky). Taylor has several doctors at Seattle Children’s Hospital and Swedish Hospital and we are so lucky to live so close to some of the most amazing medical staff in the country. We have been so fortunate to run into the NODCC, a national non-profit that supports and advocates for children with this condition. The organization provides education, current medical research, support, and a community for those that are affected by this rare disorder. The NODCC is a great group of people that are doing amazing things for those affected by a Disorder of the Corpus Callosum.

Although it will be a challenge for me to complete this race, the challenge is nominal compared to what children with DCC must overcome to achieve simple developmental milestones that most take for granted. When I am in the final miles of this race I will be thinking about all of the hard work that children with DCC do to learn simple tasks such as sitting, eating, crawling, walking, etc.

You may write a check directly to the NODCC or make a donation at http://www.nodcc.org and include that it is on behalf of “Boston for NODCC”. The NODCC’s address is PMB 363, 18032 C Lemon Drive, Yorba Linda, CA 92886. Thank you in advance for your support. If I have missed anyone feel free to forward along.

Sincerely,

David, Lisa, Lauren, Jake and Taylor Gurry