Baby Steps

Last week I received an email that I'd anxiously been waiting for. Hudson was officially accepted into the clinical trial for EPI-743 at Stanford! It had been in the works for a while but I didn't want to say anything until it was official. We leave October 24, next Monday.

A lot of people have asked me what EPI-743 is, what does it do? The short version is that it is an improved form of CoQ10, a supplement he currently takes. The trial form is formulated to be able to cross into the brain, which regular CoQ10 can't do. The trial drug has shown promising results so far in terms of increased energy, strength, and cognitive awareness. This drug is not a cure for mitochondrial disease. It is a baby step on the path to a cure. I am so excited about the possibilities that this trial holds...take enough baby steps and suddenly you're walking, and then running. This trial, above all else, to me means hope. Hope for Hudson, other children affected by mito, hope for their futures and hope for a cure someday.

The sweet precious boy below keeps me going. It is because of him that I cling to hope so fiercely. He endures everything he goes through with a beautiful spirit that the rest of us would be blessed to find in ourselves.  How many positive things we could accomplish in this world if only we had an fraction of the fighting spirit these children have.

Below is a picture of Huddy after his heart surgery. (Caution, it's graphic.)

The picture below was taken TWO days later. Smiling. Happy. My brave boy never gives up, and we won't either. We'll keep right on taking those baby steps, one at a time.

I wanted to thank everyone who has signed up to play in the Wehring/Schaper Invitational Golf Tournament, taking place October 28. My good friend Laurie Wehring and her team have planned the most amazing event, and I know it will be an unbelievable success! All money raised is going to be donated to the UT Mitochondrial Center of Excellence, which is where Trace Wehring and Hudson receive the best care we could hope for from Dr. K. Thank you so much Laurie for inviting us to be a part of this wonderful fundraiser. Team registration for the golf tournament is closed, as all the available spots have been filled. Everyone is welcome to come out for the dinner following the tournament, tickets are $30 each. If you'd like more information, contact me or Laurie Wehring.

Since we will be in California, we won't be able to be at the golf tournament. I'm disappointed that we have to miss it, but participating in the clinical trial is a beautiful reminder of what fundraising dollars do! They further research and progress, and that is something to be hopeful about!