On Tuesday, November 6th, our lives changed once again.
When newborns are delivered in the state of Arizona, they do a blood draw that gets sent off to the state for genetic screening looking for mutations and defects that are the causes of many disorders. The recent advances in the field of genetic mapping have allowed them to precisely pinpoint problems right off the bat. Asher’s screening came back yesterday and shows that our little boy has Cystic Fibrosis.
Normally, this disease isn’t diagnosed in children until later in life when they have showed problems growing and have had multiple lung infections (pneumonia etc…). At that time, they would do a series of light testing designed to find out if he has indicators of CF. The final test to determine one way or another would be the genetic test, which Asher received at one day old in the hospital.
Cystic Fibrosis is a terminal and progressive disease but there have been tremendous advances in the medicines and treatments available in the past decade or so which should allow him to live a fairly full life with most of the things that other people enjoy. Of course, there will be many hurdles for him to overcome and lots of expenses involved. The disease effects the production of mucus in the body. Your entire body is run on slick, slimy mucus which it produces. It allows your lungs to operate and expand and contract easily. It allows your digestive tract to move food and the enzymes needed to digest that food through your body. In Cystic Fibrosis the gene that regulates that mucus production is mutated causing the mucus that is produced to be very thick and sticky. This causes many complication but mostly problems relating to the lungs and breathing and to the digestive tract. Life expectancy of someone with the CF currently stands at 37 years old but the literature that we have read says that someone diagnosed today and at this extremely young age can expect to life to the 40s or 50s even if there are no advances in current medical technology. Jeremy, being the science nerd that he is, has confidence that medical advances will continue and will allow his quality of life to improve even more with every passing year. There is also some promising research in the field of gene therapy which would allow them to inject healthy cells with the correct genome into his body. These things are all up in the air and hypothetical. But out God is not.
We pray, and ask you to pray with us, that God would heal Asher. We know he can do it, even though we don’t expect anything from Him. If, instead, He sees that this is part of His plan, than we would ask that Asher would have a mild form of the disease and that He would give wisdom to the researchers who are searching for cures. We pray that He would give us understanding and deep faith. That He would calm our fears and give us peace. We pray that Asher will live a healthy life but, more importantly, one that is pleasing to God.
Obviously, this news has been very hard on Rachel and I. We are struggling with understanding and acceptance of this news, as all parents would. Please pray with us that God would show His love, His peace, His mercy to us in this time. We love you all and thank you so much for your continuing support of our family.
Love, Jeremy and Rachel