37…When a child is born with Cystic Fibrosis today their parents are told the average person affected with Cystic Fibrosis lives to be 37. While this is leaps and bounds from where they were just 14 or even 5 years ago it isn’t enough. A parent of a CF baby is given a timeline for their child. 18 ½ is middle aged for Sloan.
Hard facts to swallow but there is good news to follow that blow to the future.
“There is hope – there is amazing research being done and we do believe a cure will be found in your child’s lifetime.” That is what the doctors tell us. Until then we do everything we can to keep our children healthy so when the cure is found they don’t skip a beat. There is a quote I found in all the research I was doing on CF that haunts me to this day -from Germany and Switzerland in the 18th century warned "Woe to the child who tastes salty from a kiss on the brow, for he is cursed and soon must die." Thank God this is no longer the case. Thank God that while 37 is the life expectancy given we know that Cf’ers are out living this number by 10’s if not 20’s of years and while we are fighting to keep our CF’ers healthy the CF Foundation, scientist and doctors are fighting to put themselves out of business by finding the cure. I say all this to put it in perspective. Our situation is not light. Everyday we put on our game faces on as we serve applesauce covered with enzymes and salt to our two month old, pat her back so hard in hopes of knocking some mucus from her lungs (there is a certain way to do it that doesn’t hurt or harm her) and hope that the people we encounter each day aren’t going to get our baby sick. Through it all we have hope for a long long life for our baby girl. Hope and prayers from our warriors out there is what allows us to stay so positive in this battle.
Yesterday I was browsing Facebook and clicked on a link a former co-worker posted and was instantly put in my place. I clicked on a blog entitled “Avery’s Bucket List” and what I read was gut wrenching. Avery also has a genetic disease only this disease has no foundation raising money and awareness and no research being done to cure this life ending disease. Spinal Muscular Atrophy (SMA.) She has been given 10 months of life and in that time her entire body will shut down, little by little. Her legs have already stopped moving. The entry I read today, told by her dad but through Avery’s eyes, went through the conversation that her parents had with the doctors. The conversation had to do with how much effort they should put into resuscitating their daughter if they walk in to her nursery one morning and find her not breathing. It is devastating to think about their reality and yet, They are living each moment they have with their daughter to its fullest! Making the most of an impossible situation. My heart hurts for them and at the same time I am so encouraged by their strength and overflowing love that they are showing during this time. It is horrible that in less than a year they will be giving their baby girl to Jesus and left coming home to a quite house and trying to put their life back together. I have seen that play out once before and I know they will never be the same. They will find a new normal and every day they will feel empty and no matter what, no matter how hard they try their little girl will never be in their arms again.
As part of her bucket list she and her parents want to spread awareness of SMA. Please take a look at their blog. Please spread the word and maybe.. just maybe.. There will be enough awareness brought to this disease that it will no longer be given no hope but instead, enough of the “right” people will take notice and begin trying to cure this “incurable” genetic disease.
I am so grateful for the people that paved the way for the CF foundation, the doctors, the scientists and the almost promise that Sloan will have more tomorrows than we can count. Avery is a pioneer for her disease and I hope that her impact on this world will bring scientists, doctors, rich people with lots of money to spend together and maybe one day there will be a little Sloan born to the world and her parents can be optimistic for a long life for their daughter instead of being forced to live with the reality that their daughter or son will never outgrow diapers or even crawl. God bless this family.
http://averycan.blogspot.com/?spref=fb
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