Just look at this little face! Don't you want to just squeeze her?
Liliane (Lilou) Manon was diagnosed with Cystic Fibrosis when she was about two weeks old after failing to thrive. Standard prenatal genetic tests had revealed both parents to carry Cystic Fibrosis genes, so we were aware that Lilou would have a 25% chance of being born with this disease.
There is tons of information about CF available, but if there is anything we'd like you to know about the disease it's this:
it is a progressive disease and there is no cure. Median life expectancy for a CF patient with adequate medical care in the USA has recently been raised from age 37 to age 41. While Liliane is healthy at the moment, it takes quite a bit of work to keeps her that way. CF medications are still referred to as life extending as opposed to life saving and likely will continue to be until a cure is found.
We'd love it if you would participate in this year's Great Strides walk as part of Team Lilou, and since we're a national team, you can do just that from pretty much anywhere!
There are hundreds of Great Strides events across the USA throughout May and June. I guarantee there's an event near you.
REGISTRATION IS FREE!
The walk is entirely optional. You can walk with the group, or you can just hang back, eat some free food, dance to the band or DJ, or just meet lots of great people.
With the event being held outdoors, Great Strides tends to be a very social event as infection control policy prevents more than one Cystic Fibrosis patient in an enclosed space at one time.
There are dozens of activities set up for the kids- from Build Your Own Birdhouse to free bounce house time.
And, whether you participate in the actual walk or not, it's a FREE day out with the kids packed with activities designed to guarantee a Saturday afternoon nap time.
If that doesn't sell you on participating, I don't know what will.
Want to join us? Here's how:
1. You can join any of our teams across the country as a walker and help fundraise by clicking the Join Our Team Button above.
2. You can lead your own team under our National Family team in a walk local to you and help recruit others to walk with you by clicking Find a Walk and following the prompts to register for a walk near you.
By becoming a member of our team or just making a donation, you are joining a growing group of people committed to finding a cure for Cystic Fibrosis. Together, we are adding tomorrows to the lives of people living with CF by supporting the search for a cure.
Thanks and God Bless,
Andrea Tassaro Shelton