At the time, they were just a family I had heard about and felt heartbroken for. Over the last year, though, I’ve actually gotten to know them a bit (online, since we live in different states) and I want to take time today to tell you more of their story, and ask for your help.
Jennifer and her husband, Thomas, have two little boys. Michael is now 4 years old and has been struggling his whole life.
It took them AGES to get a proper diagnosis of FPIES for him; by that point, his little insides were so wrecked from different GI treatments and food trial fails that he could only tolerate one thing to eat: Neocate Junior Unflavored.
Then, in May of 2012, Nutricia changed the label on the can. Despite their claims that the label change was the ONLY change they made to the formula, after the label change Jennifer (and hundreds of other families) were shocked to discover that their children now reacted to what was once their only safe food.
Poor Jennifer suddenly began scavenging to buy as much of the “old label” formula as she could to help keep her son safe, while conversing with Nutricia about a solution for her son. The woman has left no stone unturned on this quest; she’s driven Michael thousands of miles to consult with doctors at the Mayo Clinic, bought every can of safe formula she can find, asked questions, pushed for answers, and through it all, she was going to school to be a nurse! She’s amazing!
Finally, some good news came last fall: Michael found a safe food! Hemp! He can tolerate limited quantities of hemp with no reaction!
Then another! Sugar! He can tolerate one brand of sugar!
This is joyous news, of course, but I don’t think it takes a genius to figure out they were still in dire straights…after all, a child cannot live on hemp and sugar alone.
Still, Jennifer is a praising, optimistic woman, and this was good news for her and her child.
Another blessing that happened in their lives last year: they had another baby!
They hadn’t planned on having another child. They sort of weren’t sure if they were ever going to have another child. But they got pregnant anyway.
God’s ways are mysterious, and sometimes we don’t know the explanation for why things happen.
Sometimes, though, we do.
What happened next is extraordinary: Jennifer and Thomas learned that Michael does not only have FPIES. He also suffers with something called MNGIE, which is Mitochondrial Disease.
If we thought FPIES was rare, MNGIE takes the cake! It has only been diagnosed in 70 people. Unlike FPIES, Michael will not outgrow MNGIE, as it is an error in his DNA.
There is no treatment for MNGIE, all they can do is treat the symptoms to avoid as much pain as possible. However, there is one bright light of hope: a bone marrow transplant.
A bone marrow transplant for Michael will, in layman’s terms, “reboot” his genetic code and give him a longer, healthier lifespan.
And Matthew is a match for a bone marrow transplant for his big brother.
God’s ways are mysterious, but sometimes, it all makes sense!
Now it gets tricky, though. Because MNGIE is so rare, insurance deems any treatment for it as “experimental”…and will not cover the procedure.
So to get Michael the help he desperately needs, Jennifer and Thomas must somehow come up with $300,000 to pay for a bone marrow transplant for their son.
Just to get the process started, they must have $50,000.
Being an FPIES family, I already know what their finances are like. They don’t have $50,000 laying around. Most people don’t.
But they really, really need it.
This is one of those times I wish we were rich. I wish we were so financially well-to-do that I could just tell her to call the doctor and book the procedure and send all the bills to us. Oh, I wish that so very much!
But I can’t. We’re not rich. We’re in the same boat as her family. Hanging on by a thread.
Then I thought to myself, maybe there IS something I can do.
But it’s going to take your help!
It’s a little thing I’m asking for, but I think it will be a big help to Jennifer and Michael.
SAVE YOUR SPARE CHANGE FOR THE MONTH OF FEBRUARY AND SEND IT TO MICHAEL.
That’s it. When you find some spare change laying around, stick it in a jar. At the end of February, count it up, and go to Michael’s MNGIE Fundraising page to donate that amount to his desperately needed bone marrow transplant fund.
I have about 400 people who read my blog every day. If every one of us gathers spare change for a month, we’ll likely come up with about $5-10 each that we could send.
That’s not a lot of money for each of us to outlay.
But that’s $2,000-$4,000 we could send to help Michael get the life-saving treatment he needs!
(And let’s not be satisfied with just that: let’s share this request with all our friends online and see if we can’t get some outside support for this cause!)
So here’s what I’m asking for my friend:
- Read their story.
- Like their Facebook Page.
- Share this post asking for help EVERYWHERE you can think of!
- Gather your pocket change for February.
- Donate your pocket change to Michael.
- Come back here and leave a comment (or send me a a message) letting me know how much you donated so at the end of the month I can tell you how much your joint effort contributed.
Don’t be shy, either! Ask your co-workers for their spare change after lunch. Pick up those pennies off the ground.
I can’t ask anyone to donate large sums when I know that most of us are struggling right now.
But I think we can all scrape together some pocket change.