Thoughts and prayers are all we are asking for...

TL;DR: kid has a super severe type of ulcerative colitis, bout to bleed to death because insurance in America over rides doctor decisions Needs your thoughts prayers and positive vibes. His mama is desperate to find a way to help make him better.

This is Dawson, my oldest son, he has had a rough go of it since he was diagnosed as high functioning Autistic at 3. He’s super though. After a monumental amount of occupational therapy, speech therapy, social therapy and ABA therapy for around 8 years, he is in a mainstream classroom and in the 9th grade. He’s 14. He has lots of friends now and is doing well coping with that part of his life then 9/7/2017 happened.

Dawson started bleeding uncontrollably from his large intestines and did not tell us for 4 weeks. It wasn’t until he started acting really weird that we finally figured out what had been happening. The next thing we realized was how BAD he was bleeding.

We went to the doctor and they sent him immediately to the children’s hospital ER 110 miles from our house. They let us go because his blood counts weren’t “that bad” and told us to follow up with the GI specialist and let him go. We were back in the local ER within 2 days because he was lethargic and bleeding even heavier. That hospital called the children’s hospital and told us to come in for tests.

We went and the tests revealed what they thought was a mild case of ulcerative colitis and after the scopes came back we got shown the extent of his effected colon. He was eaten up with it.

The GI docs put him on two medicines and sent us home. 1 week later he nearly passes out and we called the doctor and told them. They immediately admitted him into Le Bonheur Children’s hospital in Memphis, TN to try to get on top of the bleeding. He was so anemic he had to have a transfusion. No medicines were working, even intravenously.

They tried so many things but the transfusion at least gave him a little bit of energy back.

This is him in the family room admiring the view of the huge pyramid in downtown Memphis from the window.

Here he is back in the bed feeling terrible. The energy was very short lived. On top of the large intestines bleeding horribly (yes still at this point) they discovered his duodenum was eat up with ulcers also.

He was in the bed for days and days feeling like death.

On this day he felt good enough to raise the bed up and sit up for a while yay! A sweet victory. If you are wondering what he was doing on his phone, that was his only sanity. He played Minecraft nonstop when he had the energy.

After 6 days apart, my parent brought our youngest, Everett to visit (it’s a two hour drive one way from our house to this hospital) and you can see how much this made Dawson happy. They fight constantly but boy were they thrilled to see each other. Dawson even hugged him and he’s NOT a hugger. Haha

Dawson moved to the chair long enough to pet Cabo the awesome therapy dog that visited him. He loves animals so much. He was really happy about this.

After day 7 we decided his mood might be pepped up by making his room a little more comfortable. So I went to target and got everything Minecraft and Mario and decked him out with bedding and new Mario tees. He took the news that he was no better pretty hard so we did our best to stay positive.

Day 8 he tried to do some catch up school work but he was just too tired after a good 30 min.

This is Steven. He’s definitely Superman. He never left our sides but to make supply and food runs. Father/husband.

On day 7, they decided to give him Humira. This is an injection form of a biological group of cells that turn down your immune system by nearly half. It fools your immune system and turns off it’s response that is causing the massive damage, in Dawson’s case, in the intestines. His mucosal lining was completely gone and the ulcers were all bleeding and the size of golf balls.

This was the last medicine they had to try and it was basically a wing and a prayer. Humira is not FDA approved for treating UC in pediatric patients but is approved for adults with it. FDA says not enough research studies have been done on the effectiveness of it in children. It worked! Within 10 hours of receiving the “loading dose of four shots his symptoms were cut in half and his color and demeanor had improved.

24 hours later he was out of bed and his bleeding had all but stopped. He was almost back to his previous self.

48 hours later he had zero bleeding and felt like his old self. They sent us home. 14 days later we would get the two shot step down loading dose and we could do it at home! Great right? Wrong.

This is me and Dawson right after he was discharged headed home.

After all of this our insurance refused to pay for the Humira shots for him. Private self paid insurance. Each single shot cost $5000 and some change. So paying out of pocket was not an option. Eventually after I fought the ins company for 3 weeks they reconsidered and decided to approve it on a 6 month trial basis and will continue to after that if we have proof it’s working. Awesome right? No

Because it took so long for them to decide they would cover it it was past the time the next dose was needed and the day after the step down dose was due he started to bleed again. And in that week waiting for the approval and not being rich enough to pay out right $10k for those two shots he got them a week late.

Fast forward to now. The humira has not yet been able to get back on top of his issues. If it doesn’t in 2 more months they will be removing his colon nearly all of it. And as a kid who worked so had to get to where he is and overcome his Autism, joining the band and the powerlifting team at school... all that will be no more if he doesn’t get better and ends up with a colostomy. He’s very stressed out and worried. All he wants to do is what kids do. Go to school, play video games, solve Rubik’s cubes, play the drums and finally get to be a part of a team the powerlifters. Something we never even thought he’d be able to do. He’s currently missing a lot of school, back at the doctor and ER every other day it seems.

So if you pray, say a prayer for him. Or send him some good vibes and positive thoughts.

TL;DR: kid has a super severe type of ulcerative colitis, bout to bleed to death because insurance in America over rides doctor decisions Needs your thoughts prayers and positive vibes. His mama is desperate to find a way to help make him better.