Why I Stride and Why I Think You Should Too
I don't know what else to say other than that Trikafta has been LIFE CHANGING. We keep having to buy the next size up in clothing because this kid keeps growing finally. He has been very healthy and even when he dropped significantly in lung function, earlier this year he was able to bounce right back. (This happened last year too). We walk to keep improving quality of life and supporting all of the research that will help decrease the medications and treatments provided as well as FIND A CURE FOR EVERYONE with CF. Micah isn't "cured," but he is definitely close to it.
I like the idea of adding each time I update this. People can refer below if they'd like but here's the deal - Trikafta is keeping this kid so healthy. His lung function dropped a couple of months ago, about 25-30 points below. This should have been straight to the hospital for him. We took a step back and let the Trikafta magic it. It worked, by the next weekend he was normal (well, I mean, himself). Micah continues to take a ton of medications. It'll be fun when that decreases. Let's keep raising money so that we can fund the research to get there. I am so excited that his tomorrow's keep adding and his quality of life can keep improving.
You've come to read our story? Excellent, read the red words below. I did a very good job writing this previously. I didn't want to erase it. Instead, I just want to provide an update. At this point we continue to stride for Micah's quality of life and continued treatments. We are beyond blessed that due to the fundraising efforts of the foundation, Trikafta (a triple combination "miracle drug") has finally been approved for his age. We've waited a long time for this. It means decreased hospital stays, increased pancreatic functioning, increased lung capacity and improved lung function. We have already noticed weight gain, decrease in cough, decrease in wheeze and he surely hasn't been sick. Our next steps will be in time that they can do the research that supports us stopping the other treatments because right now Micah is on about 22 pills a day plus three nebulized medications and two inhalers - including a steroid. We also want to continue to find the treatments for other CF patients because goodness knows how much we love them. If you can donate, great. If not, that's okay - thank you for reading.
We started our fight against cystic fibrosis when we received the diagnosis on my birthday, 16 days after Micah was born. Nearly a week prior to that I had received the call from the pediatrician, "Kerri, the genetic testing showed a marker for cystic fibrosis. Have you heard of this? Does anyone else in your family have it?" The answers to those questions were, "no." She assured me that the probability was low that the diagnosis would be confirmed without a history in the family. So we went for the sweat chloride test and bundled him up as hot as we could, placed electrodes all over his two week old body while my mom and I paced Diamond Children's gift shop and play area waiting for the time for them to take his sweat. A few hours later, the diagnosis was confirmed.
Since then, Micah's journey has been a positive one. Many patients with CF are not so lucky. Mark and I often reflect on the first year when we would share the diagnosis and people would respond (especially those familiar with the illness), "I'm so sorry. You know though, this is a good tmie to have CF. There are alot of strides made in the quality of treatments and there's hope for a cure." We also often heard, "Before, babies with CF were lucky to live to one yaer old." His first birthday was a mile marker for us. Every birthday after becomes one too.
The comments made were true. We are lucky. We're lucky that he's had a fairly healthy journey and we're lucky with the progression of research and the trajectory of the drug pipeline. Micah should surpass the current life expectancy of early-mid 40s.
However, Micah's not the only reason we stride anymore. We have so many. Mark and I are beyond blessed to be a part of a strong, supportive CF Family filled with parents, siblings, patients and friends who give this fight their all. One of my favorite worship songs, "Beautiful Things" by Gungor says "God makes beautiful things out of the dust." We see this as we battle the disease every day. When I stride this year, the past couple of years and all future years, I stride for twins, a volleyball player, a teenager who loves his dog and video games, three men who are dads and husbands with the most beautiful families, a toddler with parents who have the best sourthern accents (and hilarious senses of humor), a CF adult whose mom will never give up fighting for him and a sister who fights hard with her, a sweet girl who is left alone because her sister was taken too soon, and an angel who our community will not let be forgotten.
Join me this year. Walk if you can, donate if you can, but however it works for you - fight with me, please, until it's done. These kids and adults deserve a better tomorrow.
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends, and co-workers who struggle every day just to breathe. I walk for them and hope you will support me in my efforts. Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
Real progress has been for those who have CF, but there is still no cure for this devastating disease and many lives are cut far too short. By walking today, I am helping add tomorrows to the lives of people living with cystic fibrosis. Will you join me? Please consider making a donation to my Great Strides fundraising campaign today!
Please support me!
Help me reach my fundraising goal by donating to my Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting groundbreaking research and medical progress. Your gift is 100-percent tax deductible.