Re: Re: Popping in again to say hello!

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Kathy, when I used to go to Mouse House I would just tell them as I bought my tickets. They also rent wheel chairs pretty cheap. Makes a huge difference in you day.. Love & Prayers, Peggy Florida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." HI , so you were here in Orlando during our record breaking heat wave...lol!. I am sure glad it is almost over. Please tell me what the disabled oass is and how you go about getting it. I like to go to the parks, but it is a real hassle with the oxygen and getting it to last long enough for some rides and everything. I reallly appreciate it. thanks. Kathy...fl PF....4/07 Wtg for the TX call > > > Hello gang, > > I've been AWOL again! Not intentionally though. It's just been busy. > > I went to Orlando to give a lecture about Hermansky-Pudlak Syndrome at > an albinism conference. Of course, a few friends and I worked in a trip > to the theme parks - hey, you can't be in Mickey's town and not visit > the home the mouse - it would just be not the thing to do! > > We had so much fun. We had a whole gang of HPS'ers. I think it was even > more fun than going with my own family because I didn't have to worry > about not being able to keep up, or getting sick or whatever. We all had > the same issues and everyone was happy to go with the flow and take > things as they came. No pressure! > > We all got disabled passes - we're all legally blind and half of us have > PF or bowel issues that make endurance an issue - so we got to go almost > to the front of the lines. It was soooo nice. > > My friend and I were the old ladies - is 44 and I'm 36 - > everyone else was in their early 20s. One of our HPS friends couldn't > join us at Disney, but we took her to Universal. She's only 22 and very > badly needs a lung transplant, but doesn't have insurance that will > cover it. It's just not right. > > I'm not pretty much working full time for the HP'S Network and just > operating on faith that somehow the money will come along to pay me. I'm > also doing some freelance work again, which feels good and helps offset > what the HPS Network can't afford to pay. > > My state's vocational rehabilitation program helped me get an office > together including a new desk and new computer equipment, plus some > adaptive tech stuff. I'm so thrilled! > > I'm off this week to man a booth at the American Academy of Pediatrics. > We're trying to get them to screen kids with albinism for HPS. > > Even when I don't have time to post, I check up on you all. I love it > that so many are on facebook so I can get a one-liner all the time on > how everyone's doing. > > > > Stay well! > > > > > > > > Hermansky-Pudlak syndrome albinism 02 / PF 06 > > > > www.heatherkirkwood.blogspot.com > <http://www.heatherkirkwood.blogspot.com/> >