Life’s been a bit hectic recently. Went to Boston six weeks ago, started seeing a new dr (chiropractic neurologist), teaching a friend how to sew, made some shorts, appointment at CHOP, finished up an internship, and some crazy life changing God moments. I am not sure if I got it all!
Invited to Boston
In today’s post, I am going to talk about my trip to Boston! My family and I did lots of exploring. My dad and I had never been to Boston before, so it was a brand new city for us to navigate. My mom had been there previously, but for a business trip. We were invited by Chiesi (pharmaceutical company who has developed an enzyme replacement therapy for Alpha Mannosidosis) to share my story with Alpha Mannosidosis at a meeting. I’ve spoken in front of hundreds of kids before, but never in front of people who know the rare disease and who are working on bringing solutions to the table.
I was hoping to write this weeks ago, but that did not happen. Everything may not be in this due to my memory issue. This experience was extremely special to me and I will always hold this moment in time in my heart.
A Quick Summary
We explored all of Boston. I would say it is safe to say we walked majority of the Boston area. We saw the harbor, Quincy Market, a Boston sign, Old North Church, Little Italy, Paul Revere’s home, Boston Public Garden, Cheers (the popular TV show), J.P. Licks (ice cream), and best of all… Chiesi 🙂
The trip was absolutely amazing and such a huge blessing from God. I haven’t really been able to explore new areas. It is a little challenging for me, especially since all of my symptoms have gotten worse since March 2020. This trip was not without the challenges. I was spacey from just being in the car for so long. When in the car, you don’t realize how much your brain has to process. It is a lot. Whenever I was out walking in Boston, I had to hold my mom’s hand because I was on stimulation overload. I am very thankful that I was able to take naps throughout the day in my hotel room. These naps allowed my brain to relax and reboot.
The Future Is Bright
With going to my new dr, I am excited to see what changes happen on the next trip we go on. I absolutely love sharing my story and truly believe that lives will be changed through sharing my story and helping families and the medical community understand this disease. I see changes happening right now (a blog post coming soon about that!!) and am very excited. Biggest thing is I am not getting spacey like I have in the past!! There is healing happening and I am extremely excited. For now, here are some photos from this trip!
Thanks for stopping by and reading this blog! Make sure to follow Achieve the Impossible Today, so you don’t miss a post. I am working on posting more consistently. If you have any prayer requests, feel free to comment them or contact me. As always, He can and He will help you through everything, we just need to seek Him first.
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