I do what I do to raise awareness for Congenital Adrenal Hyperplasia and the
Congenital Adrenal Hyperplasia Clinic at Children's Hospital Los Angeles! THAT IS A FACT! It is who I am.
Let me explain...Ryan is 24-years old. He was at The Painted Turtle Camp. He carries a recessive gene, just like me, that causes the adrenal glands to not produce cortisol.
Ryan has Congenital Adrenal Hyperplasia!
Ryan Hendler, who is half my age, is the first person (adult or child) I have met with CAH. As I have written about before, that is the rare genetic disease that I have. It took me 48 years to have this opportunity.
This is Hello Kitty sitting on my suitcase waiting for Merrill to drive us to the airport to get on plane to California to attend the Endocrine Family Weekend at The Painted Turtle Camp. She was nervous and extremely excited for this adventure.
At 5:30 a.m. (Thank you Merrill for getting us there that early!) on Friday, Nov. 4, Hello Kitty and I set out for Charlotte Douglas International Airport. We had a plane to catch on its way to Phoenix and then final destination of Burbank Bob Hope Airport. I knew flying into Burbank was a better idea than LAX. What I had forgotten was that every flight disembarks via stairs. Welcome to Southern California! It had been 6 years since I had lived in Southern California.
After feeling ridiculous trying to choose my rental car, a Chrysler 300M, HK and I got on The 5 freeway headed to Children's Hospital Los Angeles. Sarah Todd, CHLA Foundation person, met me at the entrance to the hospital. To say I was overcome by emotion of being there for the first time in about 20 years is the biggest understatement. Sarah knew I was overwhelmed and was very understanding. She just let me take it all in for a few minutes. The big hospital I knew was now a ginormous complex. We walked so many hallways!
Then history was made. I walked into the endocrinology department. One of the first CAH patients at CHLA returned to where it all began. Parts of it seemed familiar. Then I met the two people that I had been emailing and talking on the telephone with to set this experience up, the aforementioned Drs. Geffner and Kim. After meeting each other, they were off to the camp and I toured some more. My tour wrapped up with lunch. Then I said goodbye to my most gracious tour guide, Sarah.
It was about an hour and half drive up to Lake Hughes. Once I got off the freeway there was a pleasant drive through a canyon. It was funny, one thing I couldn't get away from was a running race. The Santa Clarita Marathon was on Sunday. I can't lie that the thought of participating didn't cross my mind.
|Dr. Mitch Geffner|
|Dr. Mimi Kim|
The experience at my final stop, the Endocrine Family Weekend at The Painted Turtle Camp, was beyond any expectations I had. I knew that I would meet children and families who deal with CAH, I wanted to offer hope to all in attendance and I wanted everyone to know that this salt-wasting CAH patient has done things that I "wasn't supposed to do."
|3 of the 4 Perrucci's|
|April, thank you so much for this reminder.|
It is what happened afterwards that I am still trying to process. Parents spoke to me about what I have experienced, what they may need to expect and how do I do the marathon and now my goal of a Half-IRONMAN by June 2017. Drs. Geffner and Kim both told me that the theme of parent comments was that I was the best part of the weekend.
It has taken me two weeks to figure what my appearance was for these families...I was that speaker at a conference or workshop that just wows you. You walk away just thinking about what they said. It's what other people do, not yourself. I am just Brian Hacker.
I don't say that to be bragging or conceited. I am so happy that I made that impact and that I can offer that hope to both children and parents. Dr. Geffner has said he would like me to come back next year. I plan on being there.
I haven't written as much about being at the camp as I had hoped. The thoughts and memories are in my mind and maybe that is best. There may be other times that I will talk about the experience.
Drs. Geffner and Kim, THANK YOU FOR THIS AMAZING OPPORTUNITY!
I ended the trip with something that I didn't think I'd get to do. I saw my brother, Pat, for a little bit. It was nice to be with him and talk like we hadn't been apart for a couple of years. I can't wait to possibly see him and my sister-in-law, Monica, next year.
|Me (on the left) and Pat (on the right)|
As I said in that blog post I linked up above...CAH, IT IS WHO I AM!!!
P.S. I really think if there is a way to crash the Nautica Malibu Triathlon next fall and represent the CAH Clinic as a former patient I should try to do it! Just sayin'.
To help the Congenital Adrenal Hyperplasia Clinic at Children's Hospital Los Angeles, please take some time to follow this link (http://support.chla.org/pages/tri_ingby50) to learn about my journey with CAH and how you may help support the work of the CAH Clinic. This is the reason I am doing all of this. Thank you in advance!