Thursday, May 10, 2012

Progress, Lip Service, Butterballs, & Benefits

So much going on here in our world, and it's all good! Jackson had a checkup at the CF Clinic this week, an dthe news was almost all good. His lungs sound great, but he's stopped gaining weight again. We started him on a new, higher calorie formula, and Periactin (Cyproheptadine) as an appetite stimulant. They said it would either work or it wouldn't, and we'd know in about 24 hours which way it was going. 3 days later, I'm proud to announce a nearly 2 1/2 pound weight gain, and a toddler who's now constantly asking for food and drink! It's wonderful to see him chow down with gusto. He'll visit again in a month to officially weigh in, and I'm hoping to wow his dietitian with official 'Butterball' status. Mike started his new job this week, at none other than our own Cook Children's Medical Center. It's a wonderful place to be a part of in a whole new way, and I'm so happy to see him not dreading getting out of bed for work each day. Untitled

The majority of my time right now is being spent getting ready for our annual fundraising benefit, which will follow up our Great Strides walk on May 20. We are proudly hosting the Top of Our Lungs event to benefit the Cystic Fibrosis Foundation at the Magnolia Motor Lounge, starting at noon that day! We have collected (and are still amassing) tons of donations from local businesses and artists to be raffled off at the event. Check out the new tab at the top for a full list of prizes to be won! There will also be live music from local favorites Greg Schroeder, Jake Robison, and another guest (TBA), face painting, and an appearance and hosting by one of our favorite radio personalities from 1310 The Ticket Sports Radio! The admission is a $10 donation, and every guest gets a raffle ticket with admission. The best part? You can pick and choose which prizes you want your raffle to go towards.

We've been busting our butts on this one, and I'm REALLY hoping we can rake in a bit for the CFF. FOr those in the CF world, it's all old hat, but this money is desperately needed to find better treatments and keep our loved ones with us. Fundraising is hard, and sometimes- I'll be honest- it can be a beating. When we began two years ago, we did it because we needed something to cling to, something to make us believe we wouldn't lose our child to this disease- something to do to actively fight back. But the nagging thought in my mind was 'when was the last time fundraising cured a disease? Am I making any difference at all? Is this false hope?'

The answer? Hope is a real thing. The drugs in development RIGHT NOW have the potential to change the lives of people living with CF in ways we haven't really imagined. This press statement was released this week, in regards to a the clinical trials of a drug combo that is targeted to treat the underlying defect of Cystic Fibrosis in Jackson's specific mutation of the disease. It's been in development for years, and now it's testing so well that they want to accelerate the trials and move toward FDA approval. One of the drugs, Kalydeco, is already on the market and making a huge difference for a very small segment of the CF population. The approval of this combo would affect a much, much greater number of people, and will help lead to drugs and treatments for other mutations that have yet to benefit from the current drugs. It's not a 'cure' in the traditional sense. But it is the single greatest piece of hope right now for people with CF, and those of us that love them. It's real. It's real, and it's happening, and we actually have the power to push it along. There is no federal funding for this research. There's us. So if you've ever had that nagging feeling that you're just paying lip service to this cause, quell it. Tell it to shut up. We're fighting together, every day, and it is making a difference. Do what you can, and know in your heart, that you helped.