Clem Clan

Clem Clan

Tuesday, October 11, 2011

Guys and Dolls Gala

This last weekend Sean and I attended the Cystic Fibrosis Guys and Dolls Auction Gala.. What a great time!!  I had the great privilege of speaking... to all 600 guests!  I was a little nervous, but wanted to post my speech for people who were not there.  I really appreciated the opportunity to tell Ethan,s story and educate people about CF.

Good Evening,
My name is Laura Clem.  I am a mother to two wonderful little boys.  My oldest, Ethan, is 2 and half, and my youngest, Liam is 10 months old.  When Ethan was two weeks old we were told he most likely had Cystic Fibrosis.  My husband Sean and I were completely shocked as we had no one in our family with CF.  And so began our journey into a world completely unfamiliar to us.
My husband had absolutely no idea what Cystic Fibrosis was, i knew a little about it and instantly jumped to a million conclusions, that we late learned were not true.  We went home and tried to learn as much as we could about this disease.  

In 2009 the state of indiana started testing for Cystic Fibrosis in the newborn screening.  Ethan was born in April of that year.  We are grateful that we caught it right away so that he could get the earliest start possible on treatments. Prior to the newborn screening some children would go years without a diagnosis.  Ethan was diagnosed at just 2 weeks old.

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
  • clogs the lungs and leads to life-threatening lung infections; and
  • obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
Ethan is like any normal little boy.  He loves riding bikes, running in the yard, and playing with tractors.  He also loves to have tickle fights and goofing around.  During the week Ethan goes grandmas for daycare with his friends, On Sundays he participates in his sunday school class where he learns songs and dances.  
Sean and I hear from lots of people meeting ethan “he doesn't look sick”  My response is, he isnt sick, he is doing great.
Ethan wakes up every morning at 545 to start his breathing treatments for the day.  He spends 30 minutes wearing a vest that pulsates to break up the mucus while inhaling three medications.  In the evening he has to repeat everything only adding one more medication for a total of four.
Ethans inhaled medications include, albuterol, hypertonic saline, Pulymozyme and tobramyacin.  With every meal ethan has to take 3 pills with applesauce just so he can absorb nutrients, fats and proteins.   
Some mornings and evenings are harder than others.  Most times Ethan can do his own breathing treatment while watching his favorite show, bubble guppies.   Often I will ask ethan if he is ready to do his breathing treatment.  He will respond  with an adorable “no thank you mommy” and a grin.  There are times where he gets upset during his treatment and I can understand why.  Some of the medications burn his nose and taste bad.  The vest squeezes him tightly making it very uncomfortable.  I had the opportunity to try on a vest at a CF conference and could not stand it for more than 1 minute and he does 30.  Ethan is my hero and is the strongest child i have ever met. 
So yes, Ethan is like any other little boy, he just has extras he has to do to stay healthy.  We encourage him to live a normal life, with CF as something that is just a part of him
We feel that Ethan has Cystic Fibrosis for a reason.  We will fight for him and a cure non stop until its found.  The amount of support our family receives is amazing.  We feel so incredibly blessed to have a support system that surrounds us.  It is evident at events like tonight where we are surrounding by friends who love ethan and fight with us.  My sister is one of the dolls and i could not be more proud of her and her commitment to helping cure her nephew.
Attending events like the guys and dolls gala is so important.  The foundation has committed 75 million dollars to fast track potential new drugs to treat the defect.  Without events like tonight, this would not be possible.  There are so many promising new drugs in the pipeline that need your help to get through trials and to the FDA for approval.  90 cents of every dollar donated goes directly to helping find a cure for this disease that takes children and adults to young.  CF isnt like other childhood diseases.  It is considered an orphan disease.  Which means the Government does not provide money for research.  The foundation operates solely off gifts from people like you.  I hope you will consider making a donation tonight that is 100% tax deductible. Help us make CF stand for Cure Found for Ethan and the 30,000 others in the US who live with it.

We were surrounded by great friends at this event.  Our friends Ryan and Nikki drove down with us, and Rayna and her bf Alex met us there.  My roomie from college LeeAnne was a co chair of the event and my sister a doll!  So blessed by supportive family and friends!