The difference a year makes

I’m running for TeamDan (  When Daniel was 3 years-old and first diagnosed with Ataxia-Telangiectasia it didn’t sound like we’d have very much time.  We were told that we would lose Dan in his teens, maybe in his twenties if we were lucky.  He’s still with us for now, and I’m running to help keep him here with us longer.

Soon after Daniel was diagnosed I learned about the ATCP marathon at DisneyWorld.  I wanted to do it immediately.  My kids were young though, and six months after Dan was diagnosed with his fatal condition I was diagnosed with fibromyaligia.  The physical pain I’d been feeling for months had a name but not a real treatment.  Many physicians didn’t recognize it as a “real” diagnosis.  It was certainly real to me.

This is about Dan though, not me.  Daniel has been in so many hospitals, has suffered many losses and has been resilient through so much.  I am uncomfortable asking for money.  I’m not a sales or marketing person.  Dan faces obstacles everyday that he conquers with grace at times and irritation at others.  I’m asking for your support.  As any mother knows, I would run until my heart stopped for my children.

The fact is that research on Ataxia-Telangiectasia benefits more than just Dan and other kids with A-T.  It will also lead to treatments for other neurodegenerative conditions.  Our DNA is very complex and we know so little about it.  I’m just one person, and so is my sweet son Daniel, but we are asking for your support.  Our link is:  Thanks in advance for any help you can give.  I am grateful for each day Dan and I have together.  While he can’t walk or run, I am thankful beyond measure that even with the pain that accompanies me each step, I can run for him.  Blessings and peace to each of you.

Running for Dan

I’ve been running since August.  I’ve always loved running, but haven’t been able to do it consistently since I had back surgery in my 20’s.  Fibromyalgia pain on top of that made running seem impossible.  My last race was the Hospital Hill 10k/Half-Marathon in 1987. (  I never thought I’d run in a race again.

Today is the Towamencin Township Turkey Trot. (  I signed up for it in October after running for a couple of months.  I’m nervous and a little scared.  Despite that, I will run in the race.  I am not runniing for a specific time or to win anything.  I am running because I love it, but also because my son Daniel can’t.  Dan has ataxia-telangiectasia  ( a rare, genetic, neurodegenerative disease.  Dan hasn’t run or walked in years.  He has become fatalistic of late, saying things like “I’m never going to get better” or “I just want a normal life.”  I will carry the pain of that as I run today.

I’m not a good fundraiser.  I don’t like asking people for money, even when I know it is for a good cause.  I didn’t set-up a fundraising account because I was afraid something would happen and I wouldn’t come through.  That didn’t happen though, so I will run today, for Dan and for all kids with A-T, in the hope that a treatment will be found.

I could not have done this without our Weimaraner Odie.  He will not be able to run with me today, but his energy and sweet spirit have kept me running on many days when I faltered.  We adopted Odie from Tri-State Weimaraner Rescue.(  I am forever thankful to them for allowing us to help abandoned Weimaraners by volunteering and for Odie.

Time to go run.  Wish me luck and thanks for reading.