I know it has been a while since our last update... so lots to say. But let's get started with talking about our cars. I'm sure your cars have been working hard this summer, taking you here and there, and it's time to freshen them up and get them looking sparkling clean. Let us help you out with that!! This Saturday, August 15th, the Minooka Cheerleaders are doing a CAR WASH to raise money for the Cystic Fibrosis Foundation in honor of Leah and Ben, one of our brave CF warrior friends.
Please come and support this great cause. If you are unable to actually make it to the car wash, you can still support the efforts of the Minooka Cheerleaders. Maybe consider how many cars you have and if you were to get them washed, how much you would like to donate to support their efforts. Then, simply click here and make a donation on the event page.
How is Leah doing???
Leah has had a great summer! We started off the summer with a trip to Cedar Campus in the Upper Peninsula of Michigan. Phil was staffing a week of camp for the InterVarsity college students and we were able to join him. It was a wonderfully blessed time of fun as a family and with some new friends. Leah spent the week playing at the beach, kayaking, canoeing, hiking, and playing. It was a blast!
The rest of the summer has been busy with swimming, playing with sisters and friends, and spending days at Six Flags Great America, enjoying all the spinny, dizzy-making rides and most of the roller coasters (Leah probably would have tried them all, but wasn't quite tall enough to ride some of the big ones)! FUN TIMES!!
And our sweet girl decided to donate her hair this summer. So, she is sporting a super cute, super short hairdo and loving it!
Health Update and some BIG news
Health-wise, Leah has had a good, uneventful summer. Clinically, she has been doing really well and doctor has been pleased. We even had a month off from clinic visits this summer. Her PFT (pulmonary function test) has increased, her cough has been minimal, her appetite has been good and she has been able to gain weight. It seems that her hospital stay back in March really helped us see an overall increase in her health. She is still culturing the NTM, but since she has been doing so well clinically, our plan continues to be to keep a close watch on her. We would need to see strong evidence of the NTM infection causing disease before starting treatment.
AND... We also have GREAT NEWS to share that is making waves not only in the CF community, but in the medical world. On July 2nd, the FDA approved Orkambi, the first drug developed to treat the underlying cause of CF in those who have two copies of the delta F 508 mutation, which is the most frequent disease-causing mutation for CF (and the mutations that Leah has)! Right now, it is approved for use in those who are 12 and older. We expect that within a year, it will be approved for ages 6 to 12. If you would like to read more about this exciting new CF treatment, please click here.
While this is not a cure, words cannot express how excited we are about the potential this has for Leah's future. We eagerly look forward to her benefiting from this new treatment when it becomes available for her age.
We are so thankful for all of you and your support as we continue to fight this disease. Thank You!!
We are truly blessed. We want this to be a place we can share updates on how Leah is doing with her CF. As well as a place to share our hopes, dreams, and prayer requests. Thank you for loving and supporting Leah as she fights everyday to add more tomorrows.