We are back again! Come and sign up to walk with us and help us to spread the word of the amazing work that comes from donating to this foundation!!
The research that is funded from the money we are able to raise is turning out amazing new medications and treatments for those with Cystic Fibrosis so that they can live longer, healthier lives.
When Alexander was a little over year old we were able to start a new medication called Kalydeco. This medication is one of the first of its kind that actually works to fix the C.F. causing mutation. It does this by balancing the gates in the cells allowing the water and salt to pass through more often. These channels not working correctly is what causes the thick mucus in the bodies of those with C.F. With the Kalydeco helping to open those channels more frequently, the mucus in Alexander's body should become thinner and more like how ours is. This means, in theory, that the mucus build up in his lungs should decrease, making it almost impossible for bacteria to grow in his lungs. Another benefit we will see is weight gain. His body should be able to gather nutrients more efficiently without the thick mucus blocking the way. He is now 70 pounds and in the 99th percentile! Everyday that he takes this medication his body is being helped in ways we can't even see but even though we cannot see the magic, it works and we know it is working its hardest to help Alexander breathe easier.
With Alexander's mutations he is able to take Kalydeco which has been life changing for him. Recently because of the efforts made by everyone from the researchers, to those who donate and everyone who gets involved in the clinical trials there is a new medication taking the C.F. community by storm. This new one is called Trikafta and helps 90% of those with Cystic Fibrosis who have at least one copy of DF508. It was approved for those 12 years of age and older. This is a life changing medication not just for the younger generation but also for those who have been dealing with this illness for years. Listening too their stories and how their bodies are changing while being on it for only a few weeks makes our hearts soar with hope for Alexander.
You cannot tell that he has Cystic Fibrosis unless you walk into our house and see his vest and nebulizer. He runs around all day and is quite the talker now too! He is eating like a madman snatching food from everywhere and he is finally gaining weight well. He looks healthy, he is healthy, but he still has C.F. You see the photos and videos of him but there are things that you do not see.
You do not see the medicines that he has to do twice a day to help his lungs stay clear. You sometimes see him in his vest but do you know he has to do that twice a day for 30 minutes unless sick then he has to do it more throughout the day? We show you our smiling faces because we are so in love with him and we really are one of the happiest families around but you don't see the anxiety we hide beneath those smiles whenever we go for a checkup wondering if there is anything growing in his lungs that we will have to add another medication for or how we hold our breath when he gets on a scale hoping that he is gaining weight so we can keep the feeding tubes away. That anxiety is not always there but just one day with a baby that won't eat, can bring it to the surface. This is not just how our family is, this is how every family and person affected by this disease can feel on any day.
This is why it is so important to us that we get the word about Cystic Fibrosis out to those close to us. We want everyone to know our son and love him as much as we do. We do not keep him in a bubble but that doesn't mean that we aren't cautious, we have to be. That being said we want to educate everyone about this disease because not many know about what it really is.
Join us on our walk with the Great Strides Foundation! Whether you are walking with us or donating to our cause we cannot wait to see you! The gift you give to this foundation will help add tomorrows to the lives of people with cystic fibrosis by supporting groundbreaking research and medical progress.