[Blog post written by Mark Bonnema]
“Well I’m
all grown up now…” Ok, I know several of
my friends and family may take exception to that statement, but at the least,
I’ve grown up physically. It would be a bit odd to see someone my size sitting
on Santa’s lap. The line quoted earlier
is from the song "My Grownup Christmas
List" and goes on to say, “I’m not a child, but my heart still can dream.”
As an adult, I somehow find the restraint each year to avoid crawling up onto
Santa’s lap, but I certainly resonate with the notion that my heart still can dream.
Generally
speaking, our Christmas lists tend to get a bit more abstract and immaterial as
we grow older. Time with family and
friends, relief for those who are hurting, happiness, peace, and a host of
other positive emotional states are among the things on our grownup list of Christmas
wishes.
I am
thrilled and overjoyed that within the CF community, many persons and families
living with CF have received their Christmas wish this year! Advances in drug
therapies and treatments at the genetic level, such as Kalydeco, and Orkambi
are allowing some people with CF who have specific
genetic mutations to live with a greatly reduced symptom burden. Breathing is
easier, the threat of lung infection is decreased, lung function is increased,
and life is improved! It may not come with a bow or ribbon, but these
developments in treatment certainly have been a wish fulfilled for many people
living with CF this Christmas.
But not
everyone is eligible for the new breakthrough drugs because they do not have
the specific genetic mutation that the drugs treat. These people living with CF
continue to hope and wish for a cure or definitive treatment this Christmas.
They continue to hope and wish that the next drug breakthrough will treat their genetic mutation, giving them
improvements in quality and quantity of life. Some are even left hoping and
wishing that the next breakthrough will come before it is too late. This is my grownup Christmas wish. I long
with all my heart for Ashley and so many others also living with CF to
experience symptom free living, to be able to breathe long and free and deep.
Sometimes wishes come true. Sometimes
great and beautiful things happen to fulfill our adult Christmas wishes.
More often than not, however, it seems we are forced to recycle the same wishes
year after year, as progress ebbs and flows, with fruition lying always just
out of reach. Should we give up on wishing? Be "more realistic," or
temper our hopes so as to avoid the disappointment of unrealized dreams?
Certainly not.
I think that the ability to wish and hope is great gift in
and of itself. Wishing keeps us looking forward, it allows our imaginations run
wild, chasing an image of a better and more beautiful future. That which we allow
ourselves to imagine, we can work together to build and achieve.
So I’m all grown up now, but I’m certainly not done
wishing and dreaming. My wish this Christmas is for a cure for all persons
living with cystic fibrosis. Thank you to everyone else out there who shares
this wish with me and continues to work so very hard each every day to help
this wish come true… we will keep
wishing and working until CF stands for Cure
Found!
Give something special and
memorable to someone you love. Donate any amount to the nonprofit Breathe
Bravely in honor of someone and get a personal message sent to them from
Ashley. How?
Step 1. Donate at www.breathebravely.org/donate
Step 2. Send Ashley an email at
breathe.bravely@gmail.com with donor and recipient information.
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