For those of you who do not have a blog, but follow our story, now is a great time to take a peek at the many other bloggers out there. Just a warning, there are many adorable kids and amazing families out there that have incredible stories. Be prepared to spend a lot of time online reading all of their blogs!
Our almost five month old (yikes, how did that happen?) son Gavin was diagnosed with the life-threatening disease, Cystic Fibrosis, when he was just five days old through the newborn screening test. We have absolutely no family history of this disease so it came as a huge shock to us, our family, and our friends. As devastating as his diagnosis is/was, we are so glad that he was diagnosed at such a very young age so we could begin his preventative therapies right from the start!
We live in the "frozen tundra" of the north and find it to be a huge blessing to be located very near the University of Minnesota which has one of the best CF Clinics in the world! Sometimes it is hard to believe that our little man already has a team of doctors fighting for him (pulmonologist, respiratory therapist, nutritionist, genetic counselor etc), but we are so lucky to have them in our lives. Because of their dedication to this nasty disease, we are able to live a fairly normal life with our beautiful little boy!
We have decided to raise Gavin just like we would raise any other little boy. Don't get me wrong, we do take many precautions before letting our little guy out in the world, but we are doing our best to allow him to live as normal a life as possible.
Currently, Gavin does about one hour of breathing treatments/chest therapy a day. At his young age he tolerates them so well! He often falls asleep/stays asleep throughout them. He also takes pancreatic enzymes with every "meal" allowing him to absorb the fat & nutrients in the food that his body otherwise would not be able to absorb on its own.
Gavin has two gene mutations that caused his disease. The mutations are Df508 and G551D. We are again so incredibly lucky because there is a medication in the works called VX-770, which is geared for the CFers with the G551D mutation, that will correct the defective cells in his body, allowing them to function normally. Hopefully Gavin will have access to this new drug in the next couple of years. It is currently in Phase 3 of clinical trials (out of 5 phases) and we should be able to get him on the medication once it hits Phase 4. To make a long (and complicated) story short, it has the possibility of controlling his CF like asthma is controlled with an inhaler, how cool is that! Out of the 30,000 people in the US with CF, only 300-600 people live with this mutation. This new drug gives us great hope, and many people are calling it the "cure for CF."
We have been told by our doctors that Gavin will live a normal lifespan, thanks to all the new and amazing advances in medicine. Yes, it does take a lot of work to keep our son "healthy." And yes, our lives will be a rollercoaster with many ups and downs. But we are so ready for this bumpy ride and love our little man more than life itself!
Thanks for stopping by and we hope that you follow us along as we embark down this crazy road of life!
** For more information on Cystic Fibrosis, please visit www.CFF.org