My name is Lila, and this is my “short” story….

I was born with a mission, and everyone knew it. It wasn't until I was diagnosed with Cystic Fibrosis, a lifelong chronic illness, that my mission became clear. It was a lot for my family and I to accept and digest (pun intended). Life changed for all of us, I became their fighter and they became my fight team.

Let me be clear… I’m not fighting because I’m weak, I am fighting because I am strong! #fightlikelila

There are a lot of things I have to do every day that most kids don’t have to do…

• Twice a day I drink a super magic medicine called Orkambi- This medicine is like armor for my body and helps me fight this CF thing. I like to drink it with maple syrup and milk... like a true Vermonter. 

 

• BUT WAIT! Every time I eat or drink anything I have to check with my fight team to make sure I get the right amount of enzymes- Usually 1 pill with snacks and 2 pills with meals. If I don’t take these enzymes my body won’t absorb anything I eat…

 

• Every morning before school and before bed I have to use my VEST. I sit down and use a machine that shakes my chest/lungs like a washing machine- This moves all the “yuck” in my lungs around so they don’t grow more bacteria and make it harder for me to breathe. These “shake vest treatments” are 20 minutes in the morning and 20 minutes at night… More time than I get on the playground…

 

• When I do my “shake vest” I also have to inhale saline vapor from my “smoke machine” (Nebulizer) this puts salt water into my lungs, and helps move around the “yuck!”

 

• I can’t forget to take my mega vitamins. I swallow them all on my own- Party Trick! I need to take extra vitamins to stay super healthy. Because If I get sick, I have to do more vest treatments and take more medicine…

 

• There are a lot of doctors' appointments and tests that I have to do... I get to see my friends at Dartmouth Hitchcock, but I hate bloodwork and throat cultures. My fight team reminds me it's part of being special and being a #fighter

 
My family and fight team worry a lot about me, and they all take extra special care of me.  I can’t play with or in certain things that might have bacteria… like mud puddles, leaf piles, hot tubs or ponds. That’s super hard for a kid ya know!

It’s a dream of mine to #knockoutCF for all the special kids and adults like me. My fight team and I work super hard to stay positive; because we feel empowered by the work of the cystic fibrosis foundation, our team at Dartmouth Hitchcock and all their efforts to research a cure for me and the other fighters like me. Like I said before, I was born with a mission and that is to #knockoutCF 

My fight team and I will be hosting a benefit concert on May 20^th at Little City Cider Company. 100% of concert ticket proceeds will be donated to the Cystic Fibrosis Foundation. There will be food vendors on site (not included in ticket sales) and other fun attractions. Please join us in celebrating from 5-9pm!!! #untilitsdone #fightlikelila #knockoutCF
 
Lila Jones, Age 5.5

Purchase Tickets Below or Donate to My Fight!
#fightlikelila #knockoutCF Tickets, Sat, May 20, 2023 at 5:00 PM | Eventbrite