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Lucas Fights Evans Syndrome

$3,098 of $20,000 goal

Raised by 46 people in 18 months
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Lucas is a spirited 6 year old autistic boy who had a Bone Marrow Transplant on 10/25/17. Lucas has spent most of his childhood in and out of the hospital fighting a very rare white blood cell condition called chronic granulomatous disease. The transplant cured him from the CGD but...

On October 7th, 2018 Lucas was admitted to the Boston Children’s Hospital once again. He was there for 11 days. His immune system was not working. On October 22nd, Lucas was diagnosed with Evans Syndrome. His immune system is destroying it’s own platelets and neutrophils. We traded one life threatening blood disease for another without even knowing it for a whole year. 

Evans Syndrome is more rare than his previous condition. 1 in 1 million kids in the world have Evans. We are hopeful, but so far he is not responding to treatment and we can’t get more than a week at home without coming back to the hospital. 

Thanks for your support.

Please Send Mail To:
Lucas Thor Kelley
PO Box 7
Putnam, CT 06260

PayPal.me/LucasThor

Amazon Wish List: http://a.co/0JnH5Y4

Fun Fact: Lucas was in Patriot’s Day!
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Good Afternoon Friends,

I wanted to take a moment to give you the latest update. We are still here with Lucas at Boston Children's Hospital. Today is our 9th day here. Mid-week it looked as though Lucas was going to make improvements. By Saturday we almost came home. However yesterday morning Lucas' counts dropped very low. Lower than they were when we came in. He has needed 3 platelet transfusions over the last 24 hours. He has had multiple fevers, and his bone marrow seems to still be suppressed by medication, although we aren't sure which one. We did get some good news back, and that is that his cells are all donor cells. So this is NOT graft failure, at this time he does NOT need another bone marrow transplant.

It seems that there is a secondary issue going on with Lucas' new immune system. I had asked them to look into it further, and when they did they found that it does look like his system is destroying platelets at a pretty fast rate. His platelets were at 1-2 early this am, and after a 6 unit bag which is nearly 254 ml of platelets, he was only at a 9. He is now getting an 8 unit bag. After that they are going to give him an IVIG treatment. Hoping that if he has any issue with antibodies attacking platelets, that he will be given new antibodies that can take over so he can hang onto platelets and begin to make his own. Then maybe we will start to see a rise in his ANC which is that neutrophil count that is so low. That, and the fevers are what is keeping us here.

We can only hope that this new development, and change of protocol is what we have been praying for all week long. Please pray that he can hold onto these platelets, and tolerate the IVIG treatment well. Pray that his donor didn't have a rare and unknown auto immune disease they didn't see, or that when her cells were added into his body last year, that there was no issue with conception of new cells. We pray that this is what he needs to get healthy, come home and have an awesome Halloween. He got to see his dad yesterday which made him happy. He has been so tired, so weak, and he really could use your prayers.

With Love,
Lucas & Family
Platelets
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We are doing a very special raffle for Lucas! We want to take him back to Disney! Visit lucasthor.com for more info and to enter!
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Tomorrow Lucas will be having his follow up MRI. This will let us know if he has a brain tumor or not. Praying for answers, and positive outcomes! Please send your good vibes our way.
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This little guy has been through so much. We are going through so much. Being out of work, and being stuck in isolation is horrible. We are now in a jam, and we really need help. We have bills to pay, and groceries to buy. Having no income has been the greatest challenge. We want to provide for our children and we can’t. All I can think about is, will my son be okay? Will he overcome all of this? Thanks to those of you who have helped us along the way. We appreciate it and absolutely could not get by without it.
Lucas & Cuddly
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Raised by 46 people in 18 months
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