There are 178 days from the day I wrote this blog until the day my son gets his first, real shot at being healthy. Just 178 days until he turns 12 and becomes eligible for Trikafta™. To me, that is such a short time to wait until he can start. And at the same time, it feels like an eternity.
The FDA approved Trikafta in October 2019 for those with cystic fibrosis aged 12 or older and who have at least one F508del mutation. This drug is not a Band-Aid for cystic fibrosis but an actual protein CORRECTOR. It is not a cure, per se, but it's as close as we have ever gotten.
We have been on this CF journey for more than 11 years now. It is a part of our daily life. Our son knows nothing about a "normal" routine. Treatments, hospitals, doctors, and medicines have been his routine. He is our oldest child, so my husband and I don't know what it's like to be parents without this disease in our lives.
With the introduction of this promising medicine approaching, there are some mixed feelings as a parent that I am starting to feel.
As a mother, I want to protect him but also not keep him from something that could be beneficial for him. Since we have months until he begins, that leaves a lot of time to research and to listen to others' experiences. Reading over the good and the bad has caused a mix of emotions for me.
With medication comes side effects. Abdominal cramping is currently one of the most common with Trikafta. Elevated liver enzymes are another documented side effect. One of my concerns is that he won't be able to continue the medication because of these side effects. We always want our children to be as comfortable as possible, and in the back of my mind, I hope that he doesn't experience anything painful. Of course, in this situation, the good outweighs the bad. I hope that he isn't too uncomfortable and can continue taking it as long as possible.
I do feel some anxiety about my son starting this medication. One of my concerns is, what should we anticipate medically? Trikafta has shown an improvement in lung function and weight gain for many of its users. What if my son's story isn't as successful? He has been doing very well over the last few months, and it gives me a slightly uneasy feeling to start something that could change that.
Above all, I am excited. Trikafta is giving those with CF a new chance at life. I am still in awe that this was developed during his lifetime. There is no doubt that his life will change for the better after he turns 12. The worries that I have had since the moment that he was diagnosed have lessened. All the negative things he thought he would have to experience as an adult might not be a possibility anymore. I feel new hope for him and everyone with CF.
I do have to remember to control my excitement and not get carried away with expectations. Progress might be slight and take some time. To the CF community, this is just the beginning. Trikafta will not be the last medical advancement to be made with CF, and things can only get better.
My son is 11 now, but in 10 years, how much better will things be? I have to put my emotions aside and remember how incredibly fortunate my son is to have this as an option. If this new medication is a hint of things to come, amazing things are on the horizon for the CF community.
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