We were planning to go further to FL and meet some friends and Angelman families but after 19 days, driving 16 States, 4500 miles later, with 1 trip to ER, 1 ear infection and one getting-cranky-all-the-time Angel, Mike and I decided to wrap it up after dropping Mikey to Evans, GA.
We met so many wonderful people in this journey — strangers who became instant families, families we have reconnected, friends who embraced our Awareness with open arms, and learning so much from the ASF conference. We are hopeful that we will get to experience the benefits of the ongoing therapeutic science breakthroughs, but until such time, we are hopeful that with all the available resources, Matthew gets to progress, develop, and learn as many life-long skills in the journey.
This adventure was not intended as vacation, we have agendas to fulfill and awareness to spread, and just like Angelman Syndrome, we have our own limitations. The ER and Urgent care visits were necessary, there was a night that our Camper failed and stopped functioning for 6 hours, and as we are traveling home, one of the lever to shut the tank is not working. Even the camper is saying, “I need to recharge”. During our fully-packed schedule, we have not been able to cook or truly rest and savor the camping lifestyle. Our food staples consist of the convenience of Starbucks and Sonic.
You might ask … how do we do it? It is not easy, our patience are tested but we will do it again even if it means we get to spread awareness one person at a time. Just as we wrap up our NoBo (no boundaries), we, as family will forever be grateful for this experience and with thankful heart to the many sponsors who aided us and made this trip possible for us.
THANK YOU to all of you that traveled along with us and reading our adventures.
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