DAILY LIVING & MOBILITY

A reason to always Smile

Rare Disease & Syndrome

Sandi Dick

Look at me now

Looking at me now you'd never know that a year ago I was getting ready to say goodbye, talking about funeral arrangements, and coming to terms with the fact that although, 28 wasn't a long life, it was a great life. I was on hospice care, down to 10% lung function, and was unable to walk on my own at times. Now, thankfully that's all changed.

Me in a nutshell

I was born with Cystic Fibrosis, which in the 80's not much was known of my disease other than the fact that most babies born with it didn't live to be very old. The day I was diagnosed, my mother was told not to get attached to me at all. You see that's almost impossible if you are excited to be a mother and are already attached to your child as parents. My parents refused to listen to what the doctors said about my life expectancy, especially once I surpassed all of thier predictions. From the moment they got me home they instilled one thing into my head and that was to never let my disease stop me from anything I wanted to do. They never let it keep me from being a kid, participating in any activity (even when they knew my lungs probably wouldn't be able to do them, they still let me try), and they always supported every dream I've ever had. For that I'm so thankful because if not, I'd say I wouldn't still be here. I'm a fighter and a dreamer because they allowed me to be.

Sandi's Bucket List

From a young age I've always had a list of things everyone wants to accomplish and most are things like climb Mt. Everest or visit London. Yet, for me they were a little more low key, you see I still was only supposed to have a maximum age of 25 at the most. So, my list was modest at first and then it grew. At the begining my list consisted of, Graduating HS, turn 18, attend college and so on. Of course I had a few I never thought I'd accomplish. Like modeling in California, seeing I was a sick kid from WV and even working at the Playboy Mansion was a dream of mine, thanks to the Fresh Prince of Bel-Air. Low and behold all off these things happened and with such amazing rewards, friendships, and stories inbetween. Accomplishing my goals and proving the doctors wrong became my mission in life for many years until I was stopped in my tracks and began to get sicker and sicker. Still to this day, I have 2 years of life I can't get back.

The last two years

Once I was home in WV and started a nonprofit organization to spread awareness for rare and commonly unknown diseases, I was hospitalized and needed surgery, due to complications with Cystic Fibrosis. After that admission my health began to go down hill and I couldn't seem to catch a break. My lung functions drop drastically and I was needing to be evaluated for a double lung transplant, which is highly common amongst CF patients. However, I was also diagnosed with a very bad super bug that will always be in my lungs thus making transplant very difficult and only a hand full of doctors will even go through with transplant with this bug. So, I was faced with a difficult decision; go through with the transplant and maybe pull through or pass on the transplant and allow someone else with a higher chance of survival than me get a new set of lungs. Indeed I chose not to go through with a transplant. Sadly, my lungs continued to get worse and worse where I was put on hospice care and though my last days were upon me. Thankfully, something in my head said, let's move to the beach at least if I pass, I'll be on the beach. Thankfully after a month of living in Myrtle Beach I was breathing so much better. After two months I was walking around on my own and getting out and about. Now, 6 months after living in SC I no longer need oxygen, my lung functions are increasing every doctors appointment, and I'm back to bringing awareness for CF and knocking off more things from my bucket list. I'm trying to tell my story and hoping to help those with CF know that the diseases can't ever stop you from going for your dreams and making things happen. As long as you smile, stay positive, and work as hard as possible you can do anything. Disease be damned!

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