Dear Friends and Family,
This year has been our worse year with CF. As Sydney stated, CF stopped what she loved...soccer. From April through November, Syd had a cough that would not go away. She was hospitalized 3 times, starting with her 16th birthday and her final inpatient in late September was during her Homecoming dance. From May - October, Syd had a picc line and completed IV antibiotics for over 12 weeks and we still had the cough.
Then, our Christmas miracle came a little early during the first week of November. The FDA approved and immediately made available Trikafta. This drug is a game changer and was only made available because of the massive fundraising efforts by the CF Foundation. Syd was able to get the meds and within ONE WEEK of starting the medication, the cough was gone and sugar levels are getting better!
Yes, we celebrate this medicine with the CF families and everyone who donates to CF, but our fight is far from done. Trikafta buys us time. It is not a cure and 10% of the CF population cannot even take this med. So, this is where we need YOU!
As 2019 rolls out and 2020 rolls in, we remember the battles that Sydney fought this year and we celebrate this new medication, Trikafta, but we are not done. Please consider a year-end donation to the CF Foundation. We have made major HUGE gains, but we are "in this until the end" and ultimately a cure. If you question if your donations are making a difference, at the CF Foundation, YES they are. We have an amazing new medication that is making a difference with those that have CF daily!
As Sydney prepares to take the soccer field truly for her first games since June, I thank those of you who have donated and truly ask that you celebrate Syd's return by donating to the foundation so CF never stops her love for soccer again.
Syd received a 6 hour pass so she could attend the Homecoming dance in September.
Lord help us!
Christmas in November! When Sydney's new med arrived.