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Day Crop for Tanner
Scrapbook Frenzy Fundraiser for Tanner Matney
We are sorry to inform everyone that our scrapbook fundraiser event for
Tanner Matney needs to be postponed to a later date. We are sorry for any
inconveince this causes. We needed to have a certain amount of attendees and
fell short of that number. With the amount of time and money it takes to
put an event like this on we don't have much to pass onto Tanner's family
and we are hoping that if we reschedule the event for a later date our
response will be much higher. After scheduling our May 15th date we learned
to find out that there are a few other scrapbooking events happening the
same weekend. We've had a great response of people wanting to attend but
they are obligated to another event. Hopefully, we can get a date out this
week for a new date with much more advance notice and have a huge success
for Tanner's famliy. We appreciate the support of the ladies that did sign
up and we hope that you will be able to attend on the new date. We will send
out an email to all of you when we set another date for this event.
Again, thank you for your support and we hope to see you on our new
date...Tanner still needs our help.
To give everyone an update on Tanner, he is back at Johns Hopkins. The IPEX has come back and is attacking Tanners little body again. He will be undergoing another bone marrow transplant and chemo and radiation. Please pray for him and his family!
Thank You for all of your support!
Lynn and Melissa
Embellished KeepSakes
Location: Johns Hopkins, Applied Physics Lab
Merle A. Tuve Building 1 Entrance
11100 Johns Hopkins Road
Laurel, MD
It's off of Rt. 29 (Exit is Johns Hopkins and Gorman Road)
For questions about registration or classes please contact Melissa at melissa@embellishedkeepsakes.com or call 443-536-6214
To register for the day crop on May 15, 2010 see below.
If your just interested in taking a class only please put the class you would like to register for in your shopping cart and check-out.
If you would like to register for classes and the day crop please select what you would like and place them in your shopping cart and check-out.
Who is Tanner??
My name is Tanner Matney. I was born on November 27, 2008. Let me tell you about myself. I was born on Thanksgiving Day, had all my toes and fingers. My parents were so happy. A few months later I started having severe diarrhea, and vomiting. Doctors thought it was a reaction to either breast milk or formula. I also started getting a rash over my entire body, my skin was so bad, it would actually break open, again the doctors thought it was a food allergy or infant psoriasis. After many, many blood test and biopsies and several months of visiting different doctors, I ended up in the Johns Hopkins hospital, the results came in. I have IPEX.
IPEX is only found in male babies. I am told that I am the 50th documented case in the world to have this terrible disease. IPEX is an auto-immune deficiency disease. Your body's good blood cells attack your bodies good blood cells. So your cells are constantly fighting each other, and eating away at the inside of your body. I have had a feeding tube in my body for nutrients since I can't take anything by mouth. I also have a central line directly into my chest for medications. Until just recently this disease was unknown. There is still a lot of research that needs to be done so others with this disease can live. If treatment is not received, unfortunately babies will not survive past about 2 years of age. The only hope is a long process of chemotherapy and radiation, which is very dangerous. Then a bone marrow transplant is done. There are much needed bone marrow donor banks. Family members from what we were told are not usually a match. Johns Hopkins started the search in hopes that a bone marrow transplant would work. To the doctor's surprise, my mom is a match for me. She is delighted. I am now in Johns Hopkins hospital and the long process of treatments has begun. I am very sick and cry a lot. I really need my parents with me at all times. The hospital lets one of them stay with me around the clock. After the bone marrow transplant, my mom, my dad and myself must live within 15 minutes of the hospital for several months. The hospital has apartments for parents & children of bone marrow transplant patients since they must be close to the hospital at all times. The temporary housing (not provided by Johns Hopkins) for patients and their parents is provided by: Believe in Tomorrow Children foundation: www.believeintomorrow.org.
This is such a wonderful service the hospital provides for patients and their families. I hope and pray that none of you will ever need this wonderful service. In order to keep this available, your donations are so needed. Won't you please help? I really need my mom and dad close to me, and we must live near the hospital for months. Any donations are much needed and greatly appreciated. Myself and other bone marrow children all thank you. Please help us live.
Who knows after my treatment and I grow up, I can return the favor.
Thank you all and I wish you good health your entire life.
Tanner Matney
Needless to say the family has been hit with extreme medical bills. We’ve teamed up with the Patty Pollatos Fund in order to raise money for the Matney family. If you would like to make a donation, please make checks payable to:
PPF, Inc.
c/o Darcey Matney
24612 Showbarn Circle
Damascus, MD 20872
PPF, Inc. include Tanner Matney in the memo portion of the check and mail to:
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