Happy 1st Birthday, Flynn!
Flynn holds a special place in the hearts of all of us here at Mama Say What?! and today, July 25th, is his first birthday.
He’s the youngest of three beautiful boys and he has Cystic Fibrosis. It’s a horrible genetic disease that critically affects the lungs. It also affects the pancreas, liver, and intestine. Cystic Fibrosis is the most common life-threatening, recessive genetic condition affecting children today.
There is no cure.
Thanks to improved medical treatments, life expectancy has been extended into the 30s, 40s and 50s for people with CF.
Flynn was diagnosed when he was just two months old. It was a massive shock to his family that their happy, thriving baby was actually quite sick. As they learned more about this devastating disease, they realized the journey ahead would not be easy.
Every day Flynn’s mama, Leia, has to do manual physical therapy with him to help keep his lungs clear and help him breathe easier. He hates the physio. It makes him cry and it upsets his older brothers.
Cystic Fibrosis has taken a toll on this wonderful family, but throughout it all, we admire them for their resounding strength, courage, and love.
All of the mamas at Mama Say What?! wish we could do more to help, but we don’t even live on the same continent. So we do whatever we can. Whether it’s to simply offer Leia a virtual shoulder to cry on or to spread the word and help raise money for Cystic Fibrosis research.
Right now, Flynn’s family is raising money to be able to buy a Cystic Fibrosis Vest. Having one will make his daily physio a lot easier on everyone and allow Flynn and his mama to do more respiratory therapy at home. It will help him live a more normal life.
Unfortunately in Australia, where they live, this vest is not covered by medical insurance and can run upward of $12,000.
If you would like to contribute a few bucks to help, you can send money via PayPal to the email address email@example.com. Make sure to check the “Gift” box. Even if you can only spare a couple of dollars, every little bit is appreciated.
Q: Who gets Cystic Fibrosis?
A: CF is an inherited condition. For a child to be born with CF, both parents must be genetic carriers for CF. They do not have to have Cystic Fibrosis themselves.
Q: How common is Cystic Fibrosis?
A: Amongst people of caucasian ancestory, approximately 1 out of 25 are genetic carriers for CF. If two people are genetic carriers for CF and they have a child, there is:
- a 25% chance that the child will be born with cystic fibrosis
- a 50% chance that the child will not have CF, but will be a carrier
- a 25% chance that the child will not have CF, and will not be a carrier.
With each pregnancy, the risks are exactly the same. Two carrier parents may have several children with CF or none at all.
Q: How is Cystic Fibrosis diagnosed?
A: In most states in the U.S. and in Australia, babies are screened at birth for the most common mutations of the CF gene. It’s part of the newborn screening test done shortly after birth. If this test proves to be positive, a sweat test is done to measure the amount of salt in the sweat. It is with this test that the final diagnosis is made.
Want to follow Flynn and his journey? Like the Facebook page his mama created to keep us updated on how he’s doing and what fundraisers they are participating in.
We want to wish you a happy first birthday Flynn and a very happy “momiversary” to you, Leia. Know that we’re all thinking of you!