Sydney's Skiers

Why we walk...

Dear Friends and Family:

My name is Lisa Willig and I am writing you because my daughter needs your help. My daughter’s name is Sydney and she is a very active and energetic 19 year old who loves being around people. Today she enjoys water skiing, racing downhill in snow skiing, and playing soccer for Geneva College, where she is completing her Sophomore year.  Her drive to beat CF is as strong as her passion for education and this has led her to study Elementary Education and Special Education in school. 

Getting to Geneva to play soccer and study education has not been easy. When Sydney was 2 weeks old she was diagnosed with Cystic Fibrosis (CF). What is CF? Well, we have learned a lot in the last almost 20 years and we learned even more about CFRD, Cystic Fibrosis Related Diabetes, when Sydney was diagnosed almost 12 years ago.

CF causes Sydney’s body to make thick, sticky mucus, which makes it hard to breathe and it clogs her digestive system. We have learned many things during the last 19 years that allows Sydney to live a “normal” life, that has many 'extras'.

In February-May 2022, Sydney had multiple hospital stays and long runs with IV antibiotics, even while living and going to college.  We finally found out that Sydney has a microbacteria growing in her lungs.  With the help of the CF docs at the Jewish Hospital in Colorado and our Pgh CF doc, Syd started a long road (2-3 years) of 3 antibiotics to attack this bacteria.  One of the meds she is on does not even have FDA approval in the US and is shipped to us from Canada.  It will be a year in June and a recent CT scan showed the bacteria is still there, but has not spread, so the meds are doing their thing.  

Even on Trikafta, another med that Syd jumped on within weeks of FDA approval, Syd continues with all her other meds. The number of enzymes has increased to six pills per meal, and in a healthy week, Sydney takes over 300 pills. Sydney receives breathing treatments, and she wears a vibrating vest at least 2 times every day to keep her lungs clear (before and after school). She uses her vibrating vest for 600 minutes in a healthy week! Since the CF Diabetes diagnosis, Syd continues to wear a continuous glucose monitor that is constantly checking her sugar, and she gives herself insulin shots multiple times per day. The battle with her sugar has multiple bumps in the road. CF Diabetes and all of her meds often do not play nice.  Recently, Syd is barely treating with insulin, but having low drops.  The CF diabetes fight and it has no days off.

Currently, there is no cure for CF, but with your help, one could be possible in the near future. The drug pipeline and gene replacement for CF is full of hope and is already being trailed!!  What we have to remember is the CF Foundation has to sponsor many of their own drug trials due to the number of people with CF. Many large drug makers opt to work on drugs that have a larger population. (Nearly 1,000 children are diagnosed with CF each year.)  Currently there are over 40,000 adult and children living with CF.

We need your help though to reach the ultimate cure! No donations are too small. Sydney is not sitting back and depending on donations. Syd has been speaking at CF events to get her message out and her dream for a cure. Sydney does not hide her CF, instead she wants to people to understand her fight, what her life is like, and that she is proud of the battle that she fights daily. Your donation supports Sydney’s drive in finding a cure. Join her mission!

Our first 19 years with Sydney have taught us many new things but also shows us what a great future Sydney has ahead of her. I only hope that you will help in making her future the healthiest that it can be!

Thank you so much and we are in this 'until it is done'! Lisa Willig

Check out Syd’s new video:  https://www.kizoa.com/Video-Editor/d395379880k1257095o2l1/CF_WALK_2023