Celebrity Waiters part deux

Today was the Celebrity Waiters event benefiting the Cystic Fibrosis Foundation. Its basically a bunch of local "celebrities" rubbing elbows with some of the more wealthy folk in town and hopefully dropping a buck for the cause. Oscar Robertson (or Robinson?) was there, Icky Woods, Bootsy Collins, a couple of other former football or basketball starts from local schools. We were the honorary chairs of the event.

We got to the VIP reception shortly after 11 when the event started. I'm pretty sure that if you were attending the event you got into the VIP reception. We didn't know many people there. We were definitely out of place among some of Cincinnati's wealthiest. We shook hands with a few people and sipped our water before being escorted downstairs for lunch and the main event. The event was all about schmoozing. Our perception was that these folks all kind of run in the same social circle and were just getting together for a nice lunch in honor of Cystic Fibrosis.

There were a few other CF families there that we got to chat with, and a handful of people from the clinic. We gave a brief speech about how CF has affected our lives, but frankly I didn't feel like anyone there really cared. I suppose it doesn't really matter whether or not they care, or really understood why they were there. They were throwing around big bucks for a good cause, but for me it was just a little disheartening. I could only help but think to my self if they really knew, if they really understood the purpose for this event it would have a much more profound impact. But I guess the reality is, like with a lot of things in life, unless it directly affects you in some way, you really aren't invested. And thats fine, its just not what I expected. I don't really know what I expected.

Here's what we said:

Good Afternoon-

My name is Erin Moore and this is my husband Martin. We have 3 children – Ella (2), and 8mo. Old twins Lily & Drew. Drew has Cystic Fibrosis.

Drew & Lily were born on March 14^th of this year. The first day of their life was perfect. At about 36 hours old, a distended belly & an x-ray showed that Drew had a blockage in his bowel which we would later learn was something called Meconium Illeus, a red flag for diagnosing Cystic Fibrosis. It is terrifying and heartbreaking to have your 2 day old baby taken away from you, not understanding what is going on or why this is happening to you. When Drew was 4 days old he had his first surgery. At 7 days, he had his second. He was 3 months old when he had his 3^rd surgery and his most recent surgery took place on September 7^th when he was just shy of 6mo. All of these surgeries have been related to him having Cystic Fibrosis.

I remember when the doctor, he was a fellow, came into our room in the NICU at Childrens shortly after Drew's second surgery. We were almost certain of the news he was bringing us, but to actually hear the words “Drew has Cystic Fibrosis”, nothing can prepare you for that. We held it together while we talked with him. He stayed for almost 2 hours, answering our questions and talking to us about the disease. He told us there was no cure. When he left we both fell apart. The flood gates opened and a million emotions came pouring out. It wasn't fair. We wished more than anything that we could make him better, that we could take this away from him. And the hardest part was “there is no cure”.

Over the next several weeks and months we got an education on Cystic Fibrosis like nothing we had ever gotten before. There were doctors and nurses and social workers and dieticians and respiratory therapists and chaplains and so many other people who helped us learn about this disease, and to those people we will forever be grateful. I think that the most important thing that we learned during that time is that there is hope.

Everyday Drew spends about an hour and a half inhaling a series of different medicines. He does airway clearance exercises for an additional hour and a half every day. He takes special vitamins that his body is insufficient in producing. He takes enzymes every time he eats to allow his body to break down and absorb appropriate amounts of fat. Nearly every time Drew has gotten a cold he has ended up on either IV or oral antibiotics because his body begins to culture bacteria in his lungs that he cannot get rid of on his own. But he looks like a normal kid. He acts just like his sisters, and we treat him that way too. All of the advances in medicine over the past many years have given him this opportunity. But we still need new medications and better treatments. The CF Foundation has been a driving force behind nearly all of the major advances in care. CF research does not receive federal funding; the foundation relies on the support of people like you.

Back in the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond. The life expectancy for someone born with Cystic Fibrosis in 2010 is still only 37. Its amazing that 50 years ago Cystic Fibrosis was a childhood illness, and today many people are living well into adulthood, but its not good enough. Its hard to think that I may outlive my son. Its not supposed to be that way.