Charlie | DangStrong

Our last fundraising campaign raised beyond what we had hoped for. Those funds carried us for almost 2 years. Even when some enormous expenses popped up that we did not anticipate, your generosity met those needs anyway.

Know that every time we see a donation come through, no matter if it’s anonymous or if there is a name with it we are seeing a person willing to share our burden. This give us so much hope.

Ideally, right now if things go well with the current medical care plan, Katie could go back to work Fall of 2020. However if Charlie ends up needing a 3rd transplant (and if that goes well) or is just unable to progress to the point of being able to go to school, then she may not be able to go back to work until Fall of 2021.

So we’re asking for help again. To help us make ends meet so that we can continue to give Charlie the care that he needs.

Charlie’s story up to this point:

At 2 weeks old (May 2018), Charlie was admitted to the hospital for a fever. He had a cold, stayed 2-3 nights in the hospital and we were discharged. At 4 weeks old, he had another fever and diarrhea, so we were admitted again. This stay was a bit different as Charlie’s abdomen began to swell to 44cm, he was having difficulty breathing, we couldn’t get his fever to go down, and his heart rate was very high.

We were transferred from the hospital we were at to the major Children's hospital downtown. Within a few hours, Charlie was sedated and intubated because he was having trouble breathing. They did many, many tests to figure out what was going on (all they could say was sepsis), but quickly diagnosed him with HLH (hempophagocytic lymphohistiocytosis).

It’s a very rare genetic disease that is activated by a virus, usually. Basically, the immune system turns on to fight the virus in the body, but is unable to turn off, thus it begins attacking organs. For charlie, it started to attack his liver and spleen, hence the distended abdomen.

The treatment for this disease is chemo and steroids, but this protocol only suppresses the disease. The only cure is a bone marrow transplant.

Charlie had chemo and steroids from 5 weeks until 4.5 months old, then had his first bone marrow transplant in August of 2018. His donor was from Europe. The chemo they had to use to knock out Charlie’s marrow was not as strong because he was so little and weak at that point, and though at first the transplant looked successful, Charlie’s marrow started taking back over when he was just under a year old.

Charlie had to undergo another round of chemo and in June of 2019 he had his second bone marrow transplant. Charlie had two 9/10 matches on the registry and the current transplant is from a domestic donor.

So far, Charlie has a lot more difficulties with this second transplant. He's had to go back to the hospital a couple times for complications. And had to get a booster infusion of donor cells as it seems like this transplant isn't going well either.

We're committed to fight for our son's life. Because his life is worth it. 

Through this journey, we have been completely dependent upon the Lord and have found refuge in His presence. We have been carried along by the prayers of the saints and by sacrificial love (in the form of food, babysitting, money, paper towels, laundry folding, and the list goes on and on) for over a year. We know that no matter the outcome with Charlie, the Lord is good, faithful, and loving. We pray for and believe that the Lord can heal Charlie outright or through medicine. Please join us in praying for that.