My friend Maryze and I were chatting the other day. I was going over an article she wrote for a Pompe magazine. As I was going through the content, one thing in particular caught my attention. Maryze wrote about how now that Myozyme is here, Pompe patients need to look towards a future and prepare for it more.
In the past Pompe patients were not really planning for a future since we had a great chance of not living to see it. But with Myozyme the future seems a bit better. So now the problem is we need to start preparing/planning and looking forward to the future.
I’ll be honest, I live my life one day at a time. While I’m hoping for a future I’m more worried about now, the present. But now that I’m undergoing ERT, I must admit I am looking at the future more. So with that in mind, I’m listing my dreams, things I want to do, places I want to visit, people I want to meet, etc.. I hope to be able to do all these things before I die, which hopefully will not be anytime soon. Oh, I’ll also be listing things I’ve already done. You’ll know what they are since they’re already crossed out.
These things are in no particular order. Doesn’t really matter which I do first as long as I get to do them…
* Visit the Holy Land
* Find the right person for me and get married
* Have kids
* Earn enough money to have a decent life for my family and I
* Visit Apple headquarters (1 Infinite Loop baby!)
* Go back to school and take up a Masters degree (I’ve been dreaming of attending the “Academy of Art”:http://www.academyart.edu/. I want to take their online courses since that would be a perfect set-up for me)
* Visit the “Ferrari factory”:http://video.google.com/videoplay?docid=-6457427583913966018 in Maranello
* Watch an F1 race (hopefully while Schumacher is still racing)
* -Meet my biggest crush-
* -Ride a Ferrari-
* Guest on Oprah’s show to create awareness for Pompe
* -See and experience Fall (the season, I got to do this in NY last 2001)-
* Guest on Jay Leno, again to create awareness for Pompe
* Write a book
* Get an article published on Newsweek or Time
* Meet Steve Jobs
* Meet Michael Schumacher
* Make a difference with as much people as I can
* Help make the PSOD successful
* Make enough money so that I can support my mom and dad when they retire
* Walk again
* Swim again
* Ride a bike again
* Drive again (yes, before I was confined to a wheelchair I did manage to learn how to drive)
* Take great pictures (when I get my hands strong enough again, I’ll buy a DSLR)
* Visit Genzyme HQ in Boston and personally thank each and every employee for the great job they’re doing.
I have some other things but they’re escaping me right now. I’ll add to these in the future.
Hopefully when I revisit this article, I’ll be crossing out some of the things on this list.
Dear Mr. Juan
I have watched your story on a show in abscbn and me and my wife were truly inspired. do i hear right that you design web site. would you be kind to design my website as i am a breeder of the lovebale breed english bulldog. it is my passion. hope t o hear from you
regards,
mariano ng jr.
batangas city
09175356789
Wonderful plans dear, hope you will experience these this soon. I am getting energy by reading your blog, you are a great example for the fights in the life. 🙂
Juan,
I have been so touched by reading your blog and I am grateful for all that you are sharing. The support of your family is so heartwarming. My husband, Bill, who is 50 years old began Myozyme infusions 4 weeks ago at the University of Connecticut Health Center in Farmington CT. He is the first in CT to receive Myozyme infusions since the FDA approval in the USA. Bill was diagnosed with Pompe about 10 years ago when our sons were 12 and 14. He had a trecheotomy 2 years ago to assist his breathing due to the CO2 buildup which caused him to be very sleepy all the time. Anyway, it was very interesting to read about your journey with the Myozyme infusions and how your body is reacting. Bill seems to be very tired after the infusions for a few days and sometimes he has a tightness in his chest but these side effects subside and return intermittently. We will be following your progress with much interest. Your positive attitude and support from family and friends is wonderful and so important, you are a very fortunate young man! Until next time, with you in your journey…Susan