We walk and fundraise for our salty and sweet little Lulu. Lulu is three years old and is one of the small percentage of people with cystic fibrosis with two rare mutations. Up until a few months ago she was not eligible to take any of the gene modification medicines that had been benefiting so many with CF. While we were so happy advancements were being made in the cystic fibrosis community, there was always a feeling Lulu was being left behind. We would regularly read articles, studies, and posts about how so many people on Trikafta were easily gaining weight for the first time in their life, all while Lulu was struggling to gain weight despite our absolute hardest efforts.

Right before Christmas this year we received the amazing news that one of Lulu's faulty genes was added to the list of FDA approved variants that could be prescribed Trikafta (we found out from a Cystic Fibrosis Foundation article)! Her doctor immediately went through the process of working with our insurance to approve her prescription coverage of the $25,000 per month medication. Once she began taking Trikafta we immediately saw results. In just 4 weeks on the medication, Lulu gained 2lbs, and grew over 1/2"! Her persistent cough all but disappeared, and many of her severe digestive issues went away.

The Cystic Fibrosis Foundation was integral in getting this medication approved for Lulu, and so many others like her. Thanks to their lobbying efforts toward the FDA, Lulu is no longer left behind.

While Lulu's health has improved, there are still complications from CF that Trikafta cannot fix. She still must take enzymes, acid reducers, specialized probiotics and vitamins, as well as complete her daily chest PT sessions. She must go for routine bloodwork to make sure Trikafta is not negatively effecting her liver, as well as visiting multiple medical specialist to make sure no complications arise from all of her intestinal surgeries when she was a baby.

There are many members of the CF community that are still not eligible or tolerant of current gene modification medicines like Trikafta.

It is important we continue working towards a CURE for cystic fibrosis, so no one is left behind.

Please join us in the fight for Lulu's future, and ALL those living and coping with cystic fibrosis on May 18th for the Cystic Fibrosis Foundation's Great Strides walk.