Willow's Funds to Fight SDS

$1,055 of $500,000 goal

Raised by 17 people in 65 months
Jessi Klinefelter  SEVIERVILLE, TN
PLEASE HELP US PAY FOR HER PHYSICAL AND MEDICAL EXPENSES, TRIPS TO OUT OF TOWN/STATE HOSPITALS & HANDICAP ACCESIBILTY OF THE HOME! 
Willow was born with a very rare genetic condition known as Shwachman-Diamond Syndrome. It is a bone marrow failure disorder and involves multiple, and sometimes all, organs and skeletal system. SDS also increases the risk of infection (sometimes life threatening), MDS, aplastic anemia and several severe leukemias. Willow has issues with her heart, liver, growth, stomach, pancreas, bones, ligaments, muscles, skin, pain, and immune system as well as blood/bone marrow.
Willow also has Ehlers Danlos Syndrome. This is a connective tissue disorder that has affected ALL of her joints causing them to over extend and dislocate.
Currently they're trying to decide if she has mitochondrial disease...
There are NO CURES for these disorders/syndromes and this is a lifelong battle for her. She is happy and an optimistic, wonderful child who fights with all she has to live a good life.
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Update 5
Posted by Jessi Klinefelter
34 months ago
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This may be her once in a lifetime opportunity to go to Camp Sunshine! Camp Sunshine is a retreat for children with life-threatening illnesses and their families! Once ever two years they offer a week of camp for Shwachman-Diamond Syndrome patients & their families!! Which means Willow will get to meet other children with her disease! THAT IS BEYOND IMPORTANT!
Also they bring in the leading expert doctors who study SDS to meet & discuss all new "hope" & treatments for the kids/patients/families.
It's a fun filled week with people who "get it" which helps our children to not feel alone battling this disease.
The camp itself is free but the travel to & from is definitely not. Willow wants to go desperately.
We live in TN & camp is in Maine. We have to drive due to Willow's body/bone structure & pain ... & she wants to visit Washington DC on the way.
Camp is in July & so together we can come together in that amount of time to help her fulfill a dream of meeting other kids 'like her'.
Let's make this happen for Miss Willow. Her next chance to go is in 2018 & we all know that with SDS that's just simply not certain.
Thank you so much for supporting her dreams & God bless you & your generous families.
Camp Sunshine!
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Update 4
Posted by Jessi Klinefelter
40 months ago
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We will furthermore use any donations to help fund research into a cure for Willow & others with SDS by the Shwachman Diamond Syndrome Foundation
( shwachmandiamond.org ) and ONLY use a small portion for things necessary that are outside of the budget that Willow specifically needs.
Donations... Research... Treatments... A Cure. That's what we need above all else that can be offered through monetary gain.
If you cannot help please just remember us all in your thoughts & prayers and help us to spread awareness.
Children are dying before diagnosis because medical professionals don't know it exists and therefore don't know to test for it.
Imagine your child being deathly ill and the doctors saying they can't help because they can't figure it out.
That's our scary reality.
Awareness, support & prayer PLEASE.
God bless everyone who has donated & helped us spread the awareness!!!
Infection that spread within an hour after the first fever. No immunity means life threatening infections if not caught ASAP.
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Update 3
Posted by Jessi Klinefelter
46 months ago
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Thank you SO much to everyone who helped us get to Vanderbilt!! The testing is the most up to date and can do nothing EXCEPT provide more knowledge. Again SO THANKFUL!
Our next mission is her service dog! The dog has been chosen but the training has to be paid for. I'm only estimating it to be around $600. I'm not sure how much the certification costs if anything. We start the first round of training mid April! If you feel led to help with this please do. Also if you have any sources for a fund raiser message me!! I don't & never do sit idly by & wait on others to pay for things for us but I also have to make ends meet with bills and etc. Every single extra dollar helps. Nothing is freviously wasted I assure you! God bless!!
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Update 2
Posted by Jessi Klinefelter
47 months ago
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We have an upcoming trip across the state next month & the expenses will be great. I've lost my job due to my son getting sick and in the meantime have been looking for a new job. HERE IS OUR BIGGEST PROBLEM: Our only vehicle, my truck, has finally given up on us. We've been trying to fix it for days to no avail. It's old & it's tired. :( That being said I'm asking for your help. If you know me then you know I have to swallow my pride to ask. I hardly ever share this link... But without a vehicle we can't get to school, to a job, to doctors, to the store or anywhere else. PLEASE PRAY ABOUT HELPING.
We are going on prayer & faith right now.
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$1,055 of $500,000 goal

Raised by 17 people in 65 months
Created August 22, 2013
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MF
$50
Marcheta Fitzsimmons
34 months ago
DB
$20
Dianna Barkley
40 months ago

Praying for you all. God Bless!

TB
$200
toby brooks
46 months ago

Wish I could do more

$100
Tammy Chappelear
46 months ago
$50
Kay Newkirk
46 months ago

Love you guys!

AT
$50
Amy Troutman
46 months ago
$50
Anonymous
47 months ago
JM
$50
Joy Maples
47 months ago

♥ u guys!

$100
Anonymous
48 months ago
CM
$20
Crystal McGill
52 months ago

Always keeping your family in our prayers.

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