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James Ticky Man Bailey Fund

$5,640 of $50,000 goal

Raised by 66 people in 14 months
If you ever met James he would steel your heart in a minute with his uplifting personality and his charming wink. He brightens any room with his contagious belly laugh and fearless attitude. On June 29th our world came crashing down around us when we received the news that our beautiful 4 1/2 year old boy was diagnosed with Diffused Intrinsic Pontine Glioma (DIPG). This is a rare, inoperable brain tumor which is found on the Pons region of the brain stem. This is the part of the brain which controls many critical functions including breathing and blood pressure and this kind of tumor occurs almost exclusively in children. Unfortunately due to its rarity scientists do not know what causes the DIPG tumor, have a cure or even a better treatment option than radiation to this region of the brain. Because of the DIPG tumor the left side of James body has been effected, making it very hard for our once fiercely independent boy to walk on his own as well as use his left arm and hand. It has also effected his speech. James, who once had a very advanced and articulate vocabulary has now slipped backwards in his communication and fights to speak he way he once did. We are strating a fund to help with medical expenses and will be donating the remaining funds to help in the research of DIPG.
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James has now finished his radiation treatments and has had a few weeks under his belt without any radiation. He has been doing good, we have our good days and it bad. After everything he still is not able to walk on his own and his speech is impaired, though on good days he is a lot easier to understand and his words are a lot clearer.
He had his final scan and we have learned that though we did not get rid of or shrink the tumor, it has "stabilized" for now. Hopefully we have gained some more time with him for now. And we will take every moment we can as we know our time with him will be too short.
Please keep the prayers and positive thoughts coming. They are greatly appreciated.
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We have approached the final week and a day of treatments for our little Ticky man. After 25 days of treatments we were hoping to see more improvement than what we have. His speech is still gradually decreasing day by day as his frustration is increasing because of it. We have been told that in his mind he is speaking as he normally would though the words are slow to come out and that we are the ones who are have "slowed down" in understanding what he is saying. There is a lot of patients to be practiced as it frustrates him more when anyone rushes him or tries to complete his sentences. His will is still strong and and the gears in that ever so smart brain of his are still turning. We have found more creative ways to build the lego train track in the living room and he still the the train wrecks are hilarious. We are getting out and trying to do as much as we can with him. It is fun to see his face light up with some of our new adventures but it breaks my heart to see his spirit want to run and soar and his body need assistance to walk or go anywhere. We still hope to see his mobility come back but there are no promises...
At the Thusher and Tractor show
Waiting for his radiation treatment.
Fun at the county fair
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Still having fun playing the bean bag game last weekend. This past week was a harder week. They say we were at the "bubble" of his radiation treatments. Hopefully we will start to see some improvement after this week. Unfortunately his speech and pronunciation has slowed way down. He is still in over-all good spirits but tires easily. Please keep the prayers coming, we appreciate it.
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Still having fun playing the bean bag game.
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$5,640 of $50,000 goal

Raised by 66 people in 14 months
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$100
Anonymous
11 months ago
$30
Courtney Zygmontowicz
11 months ago
$500
Anonymous
11 months ago
$10
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12 months ago
$100
Anonymous
12 months ago
GS
$35
Gary Schendel
13 months ago
$100
Anonymous
13 months ago
BD
$50
Ben Dorr
13 months ago
TS
$300
Terri Smith
13 months ago
$50
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13 months ago
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