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Jenica's Page

Massachusetts Xtreme Hike

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Fundraising Progress

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Raised: $14,045.00

Goal: $15,000.00

My Xtreme Hike Story

  • Ellie holding the pills she swallows daily
This is an interesting hike year for our family ... because hike weekend falls on Abby's graduation weekend, I'll be unable to participate in the traditional Xtreme Hike in the Berkshires. As sad as that makes me, there's been a GIANT silver lining in that Ellie and her sweet friend, Carly, will be be joining me on May 22nd as we hike 20 miles At the gorgeous Tully Trail up in Athol, MA. Ellie trained all season with me when she was 10 years old, and our final training hike together was Tully, where she surprised me by completing the full 20 miles along with our fellow training buddies. She was as remarkable then as she is now, and I'm thrilled to share this experience with her again as she is now an "official" hiker herself.

 
 
This photo from November 20th, 2019 represents nearly 65 years of science, research, and fundraising. It shows Ellie taking her very first dose of Trikafta, a breakthrough therapy used for the treatment of cystic fibrosis. As most of you probably know, Ellie was diagnosed with CF in utero, and from the day of diagnosis, six full months before she was even born, Jonathan and I made a commitment to do everything we could to give our little girl the longest, fullest life she could possibly have.

In an effort to fund research and medications for Ellie and other patients with CF, our family began participating in CF Foundation events -- the Great Strides walk in May, Xtreme Hike in June, and the Cycle for Life ride in October. Ellie's Team supporters, friends, and fighters have been rallying behind us all these years, and we are nearing the half million dollar mark for funds raised, which is INCREDIBLE!!! So what actually happens with all this money that we raise? It funds treatments (like Trikafta) and is right now working toward our ultimate dream of a cure for all, because we are not there yet.

Trikafta is not a cure. It will not keep Ellie's lungs entirely from infection. It will not halt the decline of her lung function, nor will it allow her insufficient pancreas to process nutrients and fats. But what Trikafta will do (and is already doing!) is slow the progression of this disease for Ellie. This is the stop-gap until we find a cure.

 
If you have any questions, would like to have more information about the hike or would like to donate to Ellie's Team, please email or call us. We would love to talk with you!
 
With great hope and appreciation,
Jenica, Jonathan, Abby and Ellie
10 Keith Drive
Norton, MA 02766
(508) 851-0131
mailho@comcast.net

 

 

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