In need of your help

As many of you know, I am using this marathon experience to help raise funds for CFC International. Following is the letter I will be sending out. So this is shameless plug, asking for your help too. Every little bit helps, and it would mean a lot to me. Thank you.

Dear Family and Friends:

On October 7, 2007, I will be facing one of the biggest challenges of my life, the Chicago Marathon!

The training I have endured will help me complete all 26.2 miles, but it has been my commitment to run this race in honor of my niece Lillian that has kept me training, albeit the heat, the rain, and the physical pain.

Lillian was born on April 22, 2004 by cesarean section after 24 hours of labor, and spent the first 10 days of her life in NICU, unable to breathe room oxygen. The doctors did not know why, and although there were plenty of "signs," only a physician who regularly encountered patients with a rare genetic disorder would have noticed them. There were also feeding problems, and obvious developmental delays. After being misdiagnosed at age 1, she was correctly diagnosed at age 2 with Cardio-Facio-Cutaneous Syndrome.

CFC syndrome is a rare genetic condition that typically affects the heart (cardio-), facial features (facio-) and skin (cutaneous). There is no cure to treat all of the symptoms of CFC syndrome. However, with proper management and early intervention, much can be done to improve the health of children with CFC. At present, treatment ultimately depends on the unique characteristics of each individual.

Because CFC is so rare (fewer than 300 documented cases of CFC worldwide), there were no "obvious" prenatal signs during Glenda’s pregnancy that a typical ultrasound at the obstetric clinic would pick up, and at the time, a genetic test for CFC was not available. Lillian’s diagnosis came only two months after a test for CFC was made available to parents like Glenda and Kevin. CFC International was instrumental in the development of this test.

CFC International is the only nonprofit organization that serves CFC children and their families from all regions of the world. Their mission is to help families deal with the challenges of raising a child with a rare and often medically involved disorder, and to educate the general public and the medical community regarding this condition.

Lillian’s case is mild in the scope of severity of this disorder. Still, the challenges she has faced in her life have been plentiful. Lillian did not roll over until she was 1, and finally walked at 27 months. Now at 3 yrs old, she is still trying to catch up, with the help of a team of physical, occupational, speech, and behavioral therapists. She continues to make progress, under the watchful eyes of her parents. Glenda and Kevin are thankful to God that allowed them to know a definite diagnosis to Lillian’s problems, and grateful for CFC International and the help they provide families like theirs. Nonetheless, her parents understand that only God knows what the outcome of Lillian's life will be and they will continue to "run with patience the race that is set before [them] . . ."(Hebrews 12: 1)

As I run the marathon thru the streets of Chicago, it will be Lillian and other CFC children around the world who will be on my mind and in my heart. The challenges they face and the courage they show amidst it all will be my motivation through those 26.2 miles.

CFC International relies on the support of individuals, families, corporations and foundations to fund its programs and research initiatives. I am asking for your tax-deductible contribution to help CFC International continue their efforts. A donation of $1 per every mile I will run would help greatly, but anything you can contribute will make a difference. CFC International is a nonprofit 501c (3) organization, so all your donations are 100% tax deductible. Please make checks payable to CFC International.

If you would like to learn more about CFC syndrome and the efforts of CFC International, please visit their website at www.cfcsyndrome.org.

Thank you so much for your support and generosity. If you want to make a donation, email me at panama10@gmail.com for more information, or mail your donation to:
Kayra Johnson
109 Longie Dale Lane, Hazlehurst MS 39083
Checks payable to CFC International