Each spring when Great Strides rolls around and we begin fundraising for the Cystic Fibrosis Foundation, Julie and I do our best to write a letter that grabs peopleÁ¢€â„¢s attentions and hopefully inspires them to make a donation. This is actually a pretty tough task. We want to convey how devastating cystic fibrosis is, yet still rejoice in the fact that our son, Jacob, is doing well. We want to share that although JacobÁ¢€â„¢s health continues to be good, living with the disease has really taken a toll on him emotionally this year. And while we are incredibly fortunate that Jacob is doing well, lives are lost everyday. Despite the medical breakthroughs being made each day, children and adults fighting for their lives are losing their battle with cystic fibrosis.
Last week, as we toured our daughter SophieÁ¢€â„¢s classroom for open house, hanging on the bulletin board was a paper sheÁ¢€â„¢d written in class about her greatest wishes. Included among her noble thoughts was this one:
Á¢€Å“I wish my brother didnÁ¢€â„¢t have cystic fibrosis. He has to do breathing treatments two times a day and take many pills. Sometimes he gets so sick he has to go in the hospital.Á¢€
These succinct, simple words by our beautiful 10-year-old daughter brought tears to our eyes, summing up what our entire family, both blood and extended, are feeling.
Back in December, I purchased the title track/first single to Bruce SpringsteenÁ¢€â„¢s latest. As the song has received regular airplay in our house since then, the words have taken on deeper meaning.
I’m working on a dream
Though trouble can feel like it’s here to stay
I’m working on a dream
Our love will chase the trouble away
I’m working on a dream
Though it can feel so far away
I’m working on a dream
And our love will make it real someday
A couple weeks ago, we were throwing questions around and I asked Jacob what his favorite Springsteen song is. With a large portion of the BossÁ¢€â„¢s catalog at his disposal, he didnÁ¢€â„¢t hesitate to say, Á¢€Å“Working on a Dream.Á¢€
As any parent with a child suffering from CF will attest, we are all working on a dream to someday rid the world of this dreaded disease, but we canÁ¢€â„¢t do it without your help. We are asking for your support once again. On April 18th, our family will be participating in our Great Strides walk in Valencia, CA. We ask you to consider making a donation to Team Jacob.Á‚ You can donate online at our Great Strides homepage or by sending a check to our home address. Please make checks payable to the Cystic Fibrosis Foundation.
I know this year has been tough on a lot of people, but CF doesnÁ¢€â„¢t take breaks even when economic times are tough.Á‚ Please remember that no donation is too small.Á‚ If you are not able to donate at this time, we understand, and ask that you send prayers and good thoughts to our family on this day as we walk for a cure for cystic fibrosis. Or perhaps you can look up when the Great Strides is taking place in your hometown and you might consider walking and raising money to find a cure.
If you wish to make a donation to the Cystic Fibrosis Foundation, you can do so at this address: http://www.cff.org/Great_Strides/JacobMalchus
For further information about the CF Foundation and when and where a Great Strides Walk will be taking place in your area, visit the CF Foundation website.
Once again, we thank all of you for your support.
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