One In A Million®: Caitlin Granger

NORD raises awareness of rare diseases by telling the stories of affected individuals and families. In these “One in a Million” stories, we hope to communicate that every life is important and no disease is rare when it affects someone you love. Kristine Bostek recently contacted NORD to set up a restricted research fund for Dubowitz syndrome, a rare disorder that affects her niece, Caitlin Granger. Then she sent the following letter to her friends and family members, urging them to make donations in Caitlin‘s honor to this fund.

Dear Friends:

I’m on a mission. On April 21, 2008, for the first time, I am going to run the Boston Marathon. I am running for a special child in my life, my niece Caitlin Granger, to raise money toward research of a very rare syndrome called Dubowitz Syndrome (DS), a disorder that has affected Caitlin and her family’s life. While I’m training, running in the dark, cold and wet weather, I think of Caitlin and her family.

For the first 2 years of Caitlin’s life, she was considered “failure to thrive.” After several years of testing, Caitlin was diagnosed as having Dubowitz Syndrome when she was seen by Dr. John Opitz who has studied the syndrome since the 1960’s. He knew by looking at her that Caitlin is part of a very small, very special population. There have been less than 200 people worldwide diagnosed since its initial classification in 1965 by Dr. Victor Dubowitz. It is believed that many go undiagnosed or misdiagnosed. Researchers believe that the disorder may be caused by an inherited genetic condition or a chromosomal mutation. More research is needed to understand the syndrome, diagnose it and support families.

Caitlin is now 7 years old. Although she is still non-verbal, she understands more as she matures. She has gross and fine motor skills challenges but each year small improvements are seen. She attends Major Edwards Elementary School in West Boylston in an integrated Kindergarten class and a self contained classroom for students with special needs. She receives occupational therapy, physical therapy, speech and applied behavioral analysis therapy. She also sees a music therapist. Caitlin laughs and smiles the most when she hears music. What a ham! She dances and laughs, and her laugh is contagious. While I am training, some days thinking I can’t run any further, I think of Caitlin and my incredible sister and brother-in-law, Megan & Todd. They inspire me to keep pushing myself.

To be a registered runner in the Marathon, you either need to “qualify”, i.e. run 26.2 miles within a certain time for your age bracket (not gonna happen!) or raise money for a charity recognized by the Boston Athletic Association. I have chosen to run un-registered or as a “bandit”—Caitlin’s Bandit.

To help me in my mission to raise awareness, increase research and advocate for more support for those who have Dubowitz Syndrome, please consider donating to NORD, the National Organization for Rare Disorders by logging onto www.rarediseases.org, click ‘Donate Now’ and make a donation in honor of Caitlin Granger; or mail your donation to NORD, 55 Kenosia Avenue, P.O. Box 1968, Danbury, CT 06813-1968. Please note “in honor of Caitlin Granger.”

Caitlin and I thank you for your support.

Kris Bostek