Why I Raise Money for the Cystic Fibrosis Foundation

 

A portion of all my sales go to Cystic Fibrosis Research by the Cystic Fibrosis Foundation.  My niece was born in 2009 with Cystic Fibrosis, and I do everything I can to help her quality of life. At 5, she still gets a lot of nutrition from tube feeding directly into her stomach rather than solid food,  needs to take enzymes in pill form before every meal (her body does not produce enzymes to digest food), and must do respiratory therapy twice a day on top of many medications daily. Click on the link to learn more about Cystic Fibrosis.

 My niece :)Great Strides team 2014Sarah's 5th birthday! Hooray!!


 

 

Below are the remarks I made at the Great Strides opening ceremonies in West Chester in 2011.  Great Strides is a series of nationwide walks held every year by the Cystic Fibrosis Foundation to raise money for Cystic Fibrosis.  I also made a poster to explain why I walk, with pictures, and I have included some of those pictures on this page.  I think it went well, several people talked to me afterwards and shared stories.

 

If you are inspired to help after reading this page, please consider buying one of my products on Etsy:  50% of sales from my "Pinwheel collection" (developed from the motto above) and newly developed "Rose Collection" (in honor of the nickname "65 Roses," see picture on left) will be donated , and a percent of other items upon request.  My newest product I am developing are rose bowties, very excited!  See picture at the end of this page. You can also go to my Great Strides team page to donate directly.  Thanks!!

 

 Great Strides May 2011

Delivering this speech:  the blue poster to the right is the one I made for Sarah

 

Hi everyone-  I’m Rebecca Smith, team leader for “Strolling for Sarah II.”  I’ve been asked to tell my story say a few words about why I walk and raise money for Cystic Fibrosis.   Cystic Fibrosis was something I only heard about once in a while, and often confused with Cerebral Palsy and other conditions.  Then in the summer of 2009, my niece Sarah was born two weeks early with a distended belly. She was rushed to the NICU at Lucille Packard Children's Hospital at Stanford Medical Center, near where her family was living at the time, she spent the first 66 days of her life there, and it was weeks before any of the doctors would confirm the diagnosis of Cystic Fibrosis. 

 

              This was quite a surprise, for even though her parents knew a bit about Cystic Fibrosis (her cousin on her father’s side has it), Rachel, her mom, was tested for the gene mutation in 2005 and came up negative.  The mutation her mother has was identified in 2007.  Sarah had surgery when she was two days old to remove a blockage in her intestines, and later had surgery to put in a feeding tube, still her main way of receiving enough calories. 

 
respiratory therapy performed twice a day

Sarah currently lives in Champaign-Urbana, Illinois with her mother Rachel, father Larry, and brother Ben, who is 4 years old, and does not have the disease.  She will be 2 years old in July, and is doing well, thanks to the help of the Cystic Fibrosis team at Children’s Memorial Hospital in Chicago.  Her variation of Cystic Fibrosis mainly affects her digestive system: she must take external enzymes before every meal, her “dots,” as she produces little to no enzymes on her own to break down food and absorb nutrients.  A host of medicines accompany each meal, and she undergoes respiratory therapy twice a day.  Her care is too great for her to attend day care, so her parents have a nanny who comes Monday through Friday to help.  The toll on the family is immense, but Sarah continues to do well.  At her last checkup this past week, she was 72% weight for height, a great achievement thanks to new and developing therapies, as well as a feeding pump in operation overnight.  I know research through the Cystic Fibrosis Foundation has a lot to do with Sarah’s progress.

 

  I often feel helpless living so far away from my sister and all the family goes through, and visit to help care for both Sarah and Ben as often as I can.  I feel one thing I can do is raise money for the Cystic Fibrosis Foundation, so they can continue groundbreaking research to guarantee my niece and others like her with Cystic Fibrosis the best life possible!!  Her immediate family walks in Illinois, I do my best to raise funds and spread awareness at Westtown School where I work, and my parents walk in Connecticut, 3 teams under the same name: Strolling for Sarah I, II, & III.  I hope to develop quilted products over the summer to sell and raise even more money for the foundation, look for them at a walk near you!  I held two bake sales at Westtown this year, raising over $500, 1/3 of the total funds for my team, and met many students who have a connection to someone with Cystic Fibrosis.  All the support and cheers I have received when announcing updates has really been heartwarming.  The best moment was when a student came up to me and said, “my cousin says thank you.”  This cause has connected me to more fabulous people and stories about living with Cystic Fibrosis, and I feel participating in this walk and raising funds is the least I can do.  Thank you all for coming today, and supporting research that can change the lives of so many people.  I know Sarah thanks you too.

 

the quilted products are now developed! rose bowtie!