Its 3 weeks and counting until Coleson’s surgery. Each day brings more and more anxiety. I recently learned that a young girl who had the same surgery as Coleson cannot feel anything from her chest down. Her surgery was more than 10 days ago. This is the risk/reality that we face when we send our kids back to the operating room and wait for 6-8 hrs. and then even longer for them to wake up from sedation and try to wiggle their toes. My heart sunk when I read the update and I cannot express the sorrow I feel for Brynlee, her brother and her parents. I know they have not given up hope yet that she will regain feeling and so if you feel so inclined to pray or send a good thought to them, I know they could use the support. There are quite a few families having the same surgery this summer, but I think Coleson is the next in line, and I know all of us are diligently waiting for updates as each one occurs. Brynlee’s mother posted a saying, “Sometimes the best thing you can do is not think, not wonder, not imagine, not obsess. Just breathe, and have faith that everything will work out for the best.” If she can live by this, then I should be able to as well.
With that said, there is a great opportunity to support MPS research (something that doesn’t get a lot of attention) and have it TRIPLE MATCHED. If you ever have thought about donating to MPS Research this the time, triple matches don’t come often! Triple Match ends this Saturday.
Donating to #TeamMPS is easy! There are three ways to help us reach our $50,000 goal. Remember, all donations are triple matched, so a $10 donation becomes $30!
- Text the word "courage" with a donation amount to 41444.
- Donate through Penn Medicine to #TeamMPS. - This is the best way so you can learn more about MPS and this
- Donate through PayPal.May 15th is MPS Awareness Day. So please wear your purple in Coleson’s honor. I’ll be updating this blog frequently over the next several months as we climb this next mountain.
Here is a flashback from 3 years ago of Peyton Singing the "Brave" song for Coleson during BMT.