Hi my name is Margo & I am trying to raise funds for my youngest brother Isaiah for his medical care for this crazy scary disease.

A little bit about him before I get into all of that. He’s 20 years old, he’s an awesome little brother, he’s smart, funny & he’s an Eagle Scout! He’s also adopted, so we don’t know a lot about family medical history for him, but this stuff is scary & is life threatening if it is not treated properly & completely, but so much is unknown about it, that we aren’t certain what properly & completely means right now. As far as we know he is the only Covid triggered case, the others seem to be related to the Epstein Barr Virus & there are no other cases in Baton Rouge. The Doctors there have never seen this or seen hemoglobin as low as his was in a person that is alive.

Now…

From my mom:

Isaiah has an extremely rare life threatening disease called Acquired Hemophagocytic Lymphohistiocytosis (HLH). The Doctors believe that it is secondary to him having had a very mild case of Covid 2.5 months earlier.

He started feeling tired while he was out of State training for a new job. He came home when training was over & went to the urgent care clinic. He was prescribed something for his cough. He went to his first day of OTJ training & his boss sent him home, he was so pale & could barely function. He stayed in bed that day & the next but wasn’t getting better. That night he was so weak he couldn’t walk unassisted & his fever wouldn’t go down even after 800 mg of ibuprofen, so we decided to take him to the ER on the night of 10/29.

Since he was still in training he has no health insurance, so we weren’t sure what was going to happen, but they took him in immediately. He was somewhat disoriented & was having trouble breathing, but we had no clue things were as bad as they were. The Drs kept coming in to see him, they ran blood tests 4 times & then told us he was being transferred to a bigger hospital by ambulance, that he was severely anemic & needed a blood transfusion. Once we got to the second hospital we learned that his hemoglobin was at 1.8 which was what the Drs couldn’t believe at the other hospital it should be 14.0 at a minimum, had he not been in the excellent physical health he was in, he would not have survived & had we waited another day, I don’t know that he would have either. His white blood count was (still is) 0.7 and it should be 4.0 minimally. There was a Dr who happened to overhear what was going on & said he thought it could be this HLH syndrome. They told us that he would have to have blood transfusions & chemotherapy treatments starting that day & they ended up giving him 5 treatments & several units of blood & one of platelets in the 13 days we were at the hospital. He is also on folic acid & a very strong steroid every day. Now that he’s been released we are being seen at LSU/BR twice a week where he will have labs & chemo for the next 5 to 7 weeks. Once they are finished with the chemo the Dr feels that it will most likely be necessary to do a bone marrow biopsy & see if his cells are regenerating. If they aren’t (and everything I have researched says that’s not likely) then he will need a bone marrow transplant. I have reached out to a childrens hospital in Cincinnati to see if they would consider seeing him because I know he’s technically an adult now, but they do have specialist there that deal with this disease. It’s so rare that there isn’t much known, & the Drs here readily admit this is the first case they have ever seen, so I am praying that we can get to this other hospital for a second opinion & to know what we need to do to follow up.

Right now we are expected to pay approximately $1000 a week for the Doctor, chemo & other meds , plus there will be lab costs & we will have the bills from the two ERs & the 13 days of hospital & Doctors.

If I don’t hear from Cincinnati I am going to reach out to St Jude & UCLA to see if either of those hospitals can see him, so I am expecting travel & accommodation costs along with everything else.

It is hard to ask for help, but I would sell my soul right now, to get him the care & treatment that he needs. If you can’t donate, we understand & we ask for your prayers & maybe to share this post with your friends and family.

Thank you all so much,

Angie, Doug, Margo, Ace, James, Ashley & Isaiah