Toby Asks for Your Help

Our eight year old granddaughter suffers from chronic Cystic Fibrosis. A cure is her only long-term hope. You can help her and others. PLEASE READ THIS STORY.

Faith Shaw Cystic FibrosisPalm Coast, FL – March 1, 2010 – Cystic Fibrosis (CF) is a genetic condition affecting, to varying degrees, lungs (breathing) and /or the pancreas (digestion). Our eight-year old granddaughter, Faith Shaw, suffers severe involvement of both lungs and pancreas. In the long term, the only hope for those with CF is a cure.
Faith’s family and friends are participating in the May 1st CF GREAT STRIDES Walk for a Cure. Proceeds go to the Cystic Fibrosis Foundation to fund continuing research. In 1955 children with CF were not expected to live long enough to attend grade school. Research has resulted in extending life expectancy. The median predicted age of survival of CF victims is 37.4 years, up from 32 years in 2000. Gene therapy shows great promise that a cure is near.
I cannot express Faith’s plight as well as the following letter from her mother. Please read it and give if you can (and forward this message to others). You can learn more and donate on-line at: Faith Shaw’s Great Strides Website or by mail. Send a check or money order made payable to the Cystic Fibrosis Foundation (with “Team Faith Striders” in the memo section) to:
Cystic Fibrosis Foundation – Charlotte Chapter
Attn Laura Neal
7506 E Independence Blvd, Suite 120
Charlotte, NC  28227

Dear family & friends,
It saddens me to report that Faith’s follow-up visit with the CF doctor yesterday was discouraging. Months of oral antibiotics to get her lung capacity back to reasonable numbers proved unsuccessful. We began a two-week regimen of I.V. antibiotics which has succeeded in the past. It looked to be headed that way again after week one. But something changed. Her cough returned at the beginning of the second week. Yesterday we found that not only had her lung function NOT improved, it had actually gotten worse! We have never faced this before. 
Although her doctor told me not to be discouraged, I admittedly find it very difficult not to be. Whereas I trust we will eventually win this immediate battle, my heart is heavy as I now look at the war from a new perspective. 
I now realize that unless a cure is found, the day will come when no treatment, no therapy, no antibiotic will help and we will lose her. There is no “growing out of it”… no remission … only hope that a cure will be found in time.
This realization is the driving force behind our participation in the CF GREAT STRIDES Walk for a Cure, and the reason I’ve been promoting it so strongly, now with an added sense of urgency.
If you’re unable to donate, I understand. I would never ever ask or expect anyone to give what they don’t have or out of what’s necessary to provide for your own! I only ask that you consider supporting our efforts by spreading the word and forwarding this information on to as many people as possible. 
If you have already made a donation, I TRULY thank you with ALL my heart and would ask that you consider furthering your support by spreading the word. 
If you haven’t made a donation but would like to, you can do so easily and securely online at Faith Shaw’s Great Strides Website. If you are unable or uncomfortable donating online, you can send a check or money order made payable to the Cystic Fibrosis Foundation (with “Team Faith Striders” in the memo section) to:
Cystic Fibrosis Foundation – Charlotte Chapter
Attn Laura Neal
7506 E Independence Blvd, Suite 120
Charlotte, NC  28227
And of course if you would like to show your support by walking with us on May 1st at Frank Liske Park in Concord, we’d LOVE to have you! You can register as a walker at the same website I’ve listed above. There is no registration fee.
Please join with me in fervent prayer for Faith in her fight against this devastating disease. I whole-heartedly appreciate whatever means of support you are able and willing to offer, whether a monetary donation, joining our team for the walk, spreading the word to help raise awareness, etc… all of which are so important in helping the Foundation’s goal of making CF stand for “Cure Found!”
God bless you all.
Susan Shaw
5 replies
  1. Dasher Family
    Dasher Family says:

    Love and Prayers

    Toby – love and prayers to little Faith from the Dasher Family in London. Please send us her address so that our kids can send her a note of encouragement as well.

  2. Susan Romanello
    Susan Romanello says:


    My sincerest hopes and prayers for little Faith. I know what it is like to feel so helpless and desperate; my son passed at l9 with cancer of unknown origin. I wish you the best and hopefully a cure will be found soon! Tell Faith she is an inspiration to all by showing her courage and strength.

  3. Susan Shaw
    Susan Shaw says:

    Deep Gratitude from Faith’s Mom

    I am truly overwhelmed by the outpouring of support we have received on behalf of my sweet girl. There are no words available that could ever adequately express my heart-felt gratitude! On behalf of Faith, my family and myself, I thank you all deeply for your support and for your prayers. God bless you always.
    ~Susan Shaw (Faith’s mom)

  4. Tara Wilson
    Tara Wilson says:


    Dear Susan,

    My name is Tara. I am James’ mother. I never knew when James got a girlfriend, I was going to have such a heartbreak as well. I couldn’t believe it when he told me. I know about CF, not from a personal standpoint, but from a knowledgeable one.

    Admittedly, I was very proud that James was in his first walk this morning!!

    I will pray for you all that I can. Also if you ever need help with anything, please let me know….babysitting, grocery shopping, running errands or running the children around. Please let me know.

    Also, Faith said she wanted to be a vet, I have a Great Dane, a wonderful cat and a chicken!!

    I know you guys must constantly be overwhelmed with the goodness of others, but please remember what I said (without pressure)

    Hug Faith for me and Jennie (sp?) and all of you hug one another. Take Care.
    Love, Tara Wilson

Leave a Reply

Want to join the discussion?
Feel free to contribute!

Leave a Reply