MAGIC Foundation Golf Outing in honor of Devan Hanks
On Monday, September 15th, 2008, we will be hosting the 2nd Annual MAGIC Foundation Golf Outing in honor of Devan Hanks. The event will be held at the Normanside Country Club in Delmar, NY. We will be raising funds for the MAGIC Foundation.
The MAGIC Foundation is a national non-profit organization created to provide support services for the families of children afflicted with a wide variety of chronic and/or critical disorders, syndromes and diseases that affect a child’s growth. Their commitment and vision is, to reduce the emotional and physical trauma caused by growth disorders, resulting in healthier, happier children and consequently, adults. I am writing to ask for your help in ensuring the success of this event by donating to our golf outing.
Our daughter, Devan, age 3, has a rare genetic growth disorder known as Russell Silver Syndrome (RSS). RSS is a disorder present at birth that involves poor growth, low birth weight, short stature, inability to feel hunger and gain weight, differences in the size of the two sides of the body and hypoglycemia (low blood sugar). Devan has a feeding tube that is used for continuous feeds to help her gain and maintain weight. Devan has had this feeding tube since the age of 5 weeks. RSS occurs in approximately 1/75,000 births. It is one of 200 types of dwarfisms and one of five types of primordial dwarfisms. It is one of the few forms that are considered treatable with daily injections of growth hormones beginning around the age of two.
It was because of Devan’s Russell Silver Syndrome that led my husband and me to the MAGIC Foundation. RSS is so rare that few area doctors and hospitals have the ability to treat this condition due to lack of awareness. MAGIC has given us the knowledge to enable us to dictate Devan’s care when she is hospitalized, introduced us to her current physician at Mt. Sinai Hospital, who specializes in the treatment of RSS, and, most importantly, led us to families all over the world who live with this syndrome and fight the same daily challenges. We are now members of a network that give us the strength and knowledge to find the best care for our daughter. Our lives would have been very different without them, and that is why, in gratitude, we hold an annual golf outing to give back, what little we can, in order to aid MAGIC’s efforts to further research growth disorders and help more families like our own.
We would greatly appreciate your help in sponsoring our event. This is our second annual event, and because of the generosity of many, we were able to raise over $7000 for the MAGIC Foundation last year. We hope you will consider joining us in our goal of raising even more this year. All donations and sponsorship will be tax deductible. Thanking you in advance for your consideration. Please contact me for any more information.
Sincerely,
Becky Sievert Hanks
29 Jefferson Rd
Glenmont, NY 12077
(518) 439-2923
Children have a short time to grow and a lifetime to live with the results!
If you would like to donate money to our event, please make your checks out to The MAGIC Foundation, in care of Devan Hanks. All items donated for our Silent Auction are tax deductible, and we are happy to give you a receipt for the monetary value.