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chiefnut
05-16-2009, 07:07 PM
this is non football related but it has touched our lives here, unfortunately i'm not good at copying files to show you this cute little boy and his moms picture but he is dying from a rare blood disorder. although he is from my area there is a national registry for donors to help children like him and the test is just a swab of your cheek, which you can do at home and send in. i've copied the text of his story, i'm sure there are many oithers like him across the country. we had a donor drive here today but i found out i'm too old so i just bought stuff and donated some money. hundreds turned out today to be tested and give their time and money...i hope it helps.
Liam and Shelley Schulze


Michelle “Shelley” Slezak-Schulze was born and raised in the Suscon part of Pittston Twp. She is a ‘96 graduate of Pittston Area and an ‘01 graduate of Misercordia. She has been living in Colorado Springs for the last 5 years with her husband Chris. On January 2, 2008, they were blessed with a baby boy, named Liam (his name means “Powerful Warrior”). When Liam turned 4 months old, he began spiking high fevers. He would cry in pain for about a week. Everything would return to normal in between his episodes, but his fevers would return every month for about 1 week like clockwork. After a year of vigorous testing and specialists, not one doctor could explain why this was happening to Liam.
On Tuesday, March 24, 2009, Liam was admitted to The Childrens Hospital in Denver, CO. This episode seemed different from the others because he stopped eating and along with the fevers, was extremely lethargic. His abdomen was very distended and he became very jaundiced. This lasted for over 10 days. He was also in pain and dehydrated.
On Wednesday, March 25 , 2009, Liam had a consult from oncology/hematology. He had to undergo various diagnostics including x-rays, ultrasound, bone marrow biopsy and a lumbar puncture. The results were devastating. Liam was diagnosed with Hemophagocytic Lymphohistiocytosis, or HLH. HLH is a rare blood disorder and is fatal if untreated! Liam has been fighting this for over a year, which is a miracle in itself. Most children do not survive over 2 months when this disease is untreated. Patients with HLH have an over abundance of histiocytes and lymphocytes in their body (both of which are white bloods cells that fight infection). Histocytes are made by the bone marow, which is why a transplant is necessary in the near future. These cells begin to accumualte in good tissue trying to destroy it and cause damage to various organs. In some ways, histiocytosis is similar to cancer and has historically been treated by oncologists with chemotherapy and bone marrow transplants, but is not considered a cancer.
It is approximated that histiocytosis affects 1 in 200,000 children born each year in the United States. This illness is so rare, there is little research into its cause and treatment, and it is often referred to as an "orphan disease," meaning it strikes too few people to generate government supported research.
Liam has already begun chemotherapy and has been transferred to Cincinnati Children’s Hopspital, where this disease is treated more than anywhere else in the U.S. It has been confirmed that Liam has the genetic form of the disease and will definitally need a Bone Marrow Transplant if he is to have any chance at beating this disease. They now need to find a donor and hope that Liam is strong enough to hold on until the transplant process can begin. There is truly not enough knowledge about this disease to know what lies ahead in Liam’s journey or how he will pull through. No one can imagine how devestating this news could be to his parents. To look in the eyes of a child that they have raised and loved every day of his life, and not know what the next day will bring, is so difficult. They live day by day learning, loving, hoping, and praying that Liam will be cured!
These bracelets represent Liam!! The royal blue color represents the color of the Histiocytosis Foundation. The words “Liam’s Lighthouse Shines” represents his light shining in his little heart, bringing hope to the world. Hopefully his light will reach out to everyone! All proceeds from the bracelets will be used towards Liam’s lifelong medical expenses.
A website has been designed in honor of Liam and his disease. If you would like to follow him and his familys’ fight against HLH please log on to http://www.carepages.com/carepages/LiamsLighthouse (http://www.carepages.com/carepages/LiamsLighthouse). You put in your name and email address, establish a password, and you will be listed as a friend. You can view pictures of Liam, Shelley, and her husband, Chris. They update it frequently with how Liam’s days are going and what treatments are next. You, too, can offer a message of support or read other messages that were sent. PLEASE sign up! If you, or someone you know, would be interested in making an additional donation, please make checks payable to: Liam Schulze and send them to P.O. Box 1143, Pittston, PA 18640. An account has been set up for Liam and his family. If you have any other questions, please contact Holly Newcomb-Hochreiter by phone at 570-313-9940 or by E-mail at cohojo4@comcast.net (cohojo4@comcast.net). Carla Ferrara can also be contacted at 570-466-0211.
here is the national website www.dkmsamericas.org<http://www.dkmsamericas.org/> . This should be able to answer any questions you have.