The Giggle Hut Blog

I’m happy to share some big news with you wonderful supporters first. It has been confirmed that Jonathan has been accepted in to the Duchenne Program in Boston at UMASS (University of Massachusetts Medical) where one of the leading Doctors in Muscular Dystrophy research will be overseeing Jonathan’s plan of care. The passed several months I’ve been working tirelessly on the acceptance/intake process and making sure everythings in order. Openings are very limited, and acceptance is based off the Doctor’s decision as she interprets the data from all the medical reports. So, I’m super excited to be able to have Jonathan in the program.

What do I hope for?

• A drawn out strategic plan of care. As of now I have only a tiny idea of who exactly we’re supposed to be seeing and the frequency. Nothing was ever drawn out for us regarding the scheduling of all the specialists. At one point I was double booked for doctors of the same speciality because the doctors planned it that way. (Meaning I was seeing two different neurologists and two rehab doctors in a short span of time). From there we were burnt out on appointments and I could only conclude that the doctors here have no idea themselves and they rarely see patients with the diagnosis.
• Access to Clinical trials. Dr. Wong is one of the top and leading doctors in Muscular Dystrophy research. This is an excellent opportunity to gain some knowledge and resources for treatment. I’m not putting all my eggs in the basket for clinical trial treatments/cures, but I wanted to cut out the middle man and know upfront what clinical trials Jonathan is eligible for.
• An experienced Doctor to talk to that has had actual experience with many patients with Muscular Dystrophy. I think most Doctors here are shooting in to the dark, not necessarily by their fault but because they have limited exposure to this diagnosis.

We’ll be going to Boston for the appointments and making a trip out of the East Coast this fall. We’re looking forward to the traveling up the East Coast, and specifically: eating everything in sight, visiting historical landmarks, and popular spots (Jonathan has taken an interest in the Boston Tea party.ha!don’t ask me why). Although this is an excellent opportunity to travel with Jonathan and Joshua, it is also a challenge traveling with Jonathan’s special needs. I believe the benefits will outweigh the headaches.

Anyhow folks, I will share more details as they come later on.

TTFN= Ta-Ta for now!