LANSING – Kelleigh Gustafson is physically unable to participate in a 5K ?Color Run? fundraiser scheduled to kick off at the State Capitol here on July 12, but she?ll be cheering from the sidelines.
Kelleigh, who will be 18 on July 19 and just graduated from high school, has an extremely rare, life threatening, and inoperable birth defect, for which there is no cure, called arteriovenous malformations. The U.S. Department of Health and Human Services estimates 300,000 Americans are afflicted with AVM. Kelleigh?s specific malady puts her in a category of 1 percent of the total.
Funds generated by the run will be used for AVM research, and also will be shared by Lansing?s Sparrow Regional Children?s Center, where Kelleigh was born, where she was treated repeatedly growing up, and where Dr. Steve Guertin once saved her life.
The Gustafson family is attempting to raise $150,000 through its non-profit Kelleigh?s Cause, Inc., to fund research, headed by Dr. Patricia Burrows at the Wisconsin Children?s Hospital, to isolate a specific protein that causes AVM. When/if that is accomplished it targets development of a drug therapy. The ultimate goal is to gather enough basic research to gain financial support from the federal National Institutes of Health.
Kelleigh?s Cause has raised $60,000 to date. Runners will be asked to contribute $65 each to join in the run, which attracted 15,000 in 2013. Donations also will also be welcomed.
Her parents, Lori and Dan, resided in nearby Haslett for 25 years. The family, which includes an older sister and two older brothers, each of whom who will participate in the 5K run, moved in 2011 to Manlius, NY, a suburb east of Syracuse. Her mother, an RN, spent most of her career as nurse manager for the Ingham Regional Medical Center. Her father once served in the Michigan House of Representatives and as chairman of the Michigan Liquor Control Commission and chairman of the Michigan Gaming Control Commission. He now is executive director of the Oneida Indian Nation Gaming Control Board.
Despite her affliction, Kelleigh participated on her high school cheerleader squad and was a member of the school?s golf team, both non-contact activities. Running the 5K would be ?just too dangerous,? says her father. She has enrolled in Lemoyne College in Syracuse this fall and will study biology and tee up with the women?s golf team.
That may seem like an impossible challenge for a girl who has endured relentless infections, complications, treatments and surgeries since her abnormalities surfaced when she was just six weeks old. AVM was diagnosed when she was four years old, and her medical care has continued nonstop ever since. In February this year she underwent a six-hour procedure and will require another round of treatments starting July 15.
?The number of procedures Kelleigh has endured are too numerous to count, and each time she is at risk for blindness, paralysis, stroke and even death,? says her mother. ?We?ve got to find a cure for AVM ? not only for Kelleigh?s sake, but for all others who are afflicted by this devastating condition.?
