
CARLEIGH
I know I know….that is a heavy line to drop on you, but I write this with good reason. A very wonderful family close to my heart has been given a cross to carry in their lives and rather than dropping under the weight of their burden they have dug deep and faced their challenge with courage. Carleigh Rose is a beautiful bright eyed little girl who struggles with a very rare disease called cystinosis. I won’t get into all of the details but understand me when I say: Life is very hard for this little girl and very very hard for her family who deals with medicines, regular doctor’s visits, and trips to the hospital for tests. Carleigh is lucky enough to be at home with her family–THANKFULLY her disease is being treated and although she struggles, she is doing the best she can. Carleigh, however, will eventually need an organ transplant in her future. I received the following note from her mom a few days ago and I asked her if I could put the details on this site in an effort to help her out–she granted me her permission and is praying that God leads those who are in a position to help to do so.
Dear Friends and Family,
Little Anthony and I are participating in a Walk-A-Thon on April 26th, to help benefit a Long Valley family.
This is a subject very near and dear to us, as you all know, my daughter Carleigh battles with Cystinosis and will be needing a kidney transplant too. In an effort to “Pay It Forward” we are participating in this event.
A donation of as little as $5.00 would be greatly appreciated and will be a huge help to this family. (However, any donation would be greatly appreciated).
Please take a look at this flyer. All donations of course are tax deductible. Checks should be made payable to : COTA (Children’s Organ Transplant Association) with “Kaitlyn Cross” in the memo section. My address is : 27 Ann Road, Long Valley, NJ 07853
Thank you all in advance!
Joan DeCroce and Family
The information for the walkathon is as follows:
COTA for
Kaitlyn Cross
1st Annual Walk-A-Thon
Sunday, April 26, 2009
1 PM Start
Rock Spring Park
East Springtown RoadLong Valley, NJ 07853
All proceeds from this event go to Children’s Organ Transplant Associationwww.cota.org
Kaitlyn’s Story

Kaitlyn Shannon was born to parents Jonathan & Kelly Cross on January 30, 2006. She was six weeks premature, with a congenital kidney defect discovered shortly after birth. Her condition was carefully monitored from that point forward for any signs of renal deterioration, which, unfortunately, came quite suddenly and unexpectedly at the age of nine months. Critically ill, Kaitlyn spent a month at
Morristown Memorial Hospital, Morristown, NJ, most of that time in the pediatric intensive care unit. The subsequent diagnosis was End Stage Renal Disease. With daily peritoneal dialysis treatment and much love, Kaitlyn was finally well enough to receive a kidney transplant at seventeen months of age, from her mother, Kelly. This life-saving procedure was done by the transplant team at St. Barnabas Medical Center in Livingston, NJ on July 25, 2007. With the cost of any transplant easily exceeding $500,000, many transplant patients and their families are unable to shoulder the financial burden of such a procedure. The Children’s Organ Transplant Association (COTA) is a national charity dedicated to organize and assist local communities in raising funds for transplant-needy patients like Kaitlyn. After a request for assistance from the Children’s Organ Transplant Association, volunteers have been working with COTA in raising funds in the greater Long Valley, NJ area. One hundred percent of all funds raised will be used for transplant-related expenses like Kaitlyn’s.
I ask now, that you, if you are at all in a position to do so, to please donate something, anything you can afford, to help build funds for this wonderful organization. Children are our most precious gift, full of potential and God’s greatest fullfillment of Christ’s love. I am so thankful and so blessed to have two wonderful and healthy children….I can’t imagine what it must be like for parents who must carry the burden of a sick child. Please help today. Children like Carleigh and Kaitlyn are anxiously awaiting their new gifts–a gift you can be a part of. Please Support my friend and her son as they walk for Carleigh and others like her. Send your tax exempt check to the address contained in her letter above. God Bless.
For more information on Kaitlyn Cross and their organization see: http://cotaforkaitlynshannonc.com/
To learn more about cystinosis see: www.cystinosis.org