Overwhelmed and frustrated, I again sat at my computer looking for guidance and resources to help meet the increasing needs of my twenty three year old son Blakley, who lives with Duchenne. The list is daunting: medical equipment, a new mattress, a ramp, out of state care, physical therapy, a van to transport him, …and these are the things not covered by Medicaid. Most days, it weighs heavy on my heart and my shoulders. At times, it’s more than I can bear. It’s during those times when I’m reminded that fear ends where faith begins and I ask God to lead me. But friends, He has got a sense of humor too!
See you… in Anaheim?!
After hours of searching, I discovered CureDuchenne.org and my heart began to fill with hope again. Eager to learn more, I registered for an information packed webinar that even listed Dr. Brenda Wong as a speaker! …or so I thought. In my sleep deprived stupor, I was stunned to see the reply, “Thank you for registering for FUTURES. See you in Anaheim.”
Wait, what?! Oh, no! What have I done? (Insert face palm) How on earth am I going to get to Anaheim? I can’t go to California (but in my heart I really wanted to)!
Disappointment flooded over me as I discovered it was not a webinar, but a three-day event in Anaheim. It was unfathomable, as a single parent of two children, to think I could afford a trip to California! And being my son’s primary caregiver, a trip that far away from him in Oklahoma, was inconceivable. As my heart raced in panic, my eyes fell to a link at the bottom of the screen that read “Do you need travel assistance?” and that’s when I heard “Ask and you will receive.” It was as if my concerns had already been heard. With cautious optimism, I clicked the link, filled out the form, and a great adventure of faith began.
Within days, I was approved for travel assistance and my hotel room was secured by the CureDuchenne Cares Travel Assistance Program. I couldn’t believe it! I was stunned! My heart and my eyes overflowed with thankfulness. As I was still wondering how I would get to California, the CureDuchenne team referred me to the Duchenne Family Assistance Program – a collaborative program by Team Joseph and Little Hercules Foundation. And throughout a short series of emails and phone calls with members of Team Joseph, travel assistance to purchase round trip plane tickets for my son and I was approved! We’re going to Anaheim!
“These messages are what makes our worlds turn!”
Over the summer, our travel plans developed and changed many times before they were finalized. My son wanted so badly to bring his little sister with us and to take her to his favorite places in San Diego that he’d visited as a child when he was still walking and Duchenne wasn’t part of his reality. He selflessly wanted to make her biggest wish come true, and take her to Disneyland.
Because I lived for over sixteen years in isolation and denial of my son’s diagnosis, he did not get a Make-a-Wish trip. The guilt and disappointment over losing that opportunity for my son has been painful to live with. Now, to see him wanting to make his sister’s wish come true melted my heart. After sending a request to Kerry at CureDuchenne for a larger hotel room and requesting the host hotel, we were thrilled to receive the hotel confirmation on Disney letterhead. After thanking her profusely, she humbly replied “These messages are what makes our worlds turn.”
My gratitude for these two programs overwhelms me to tears. The CureDuchenne Cares Travel Assistance Program and Duchenne Family Assistance Program have not just paid for us to travel to a conference, they have made the dreams of two kids come true and inspired me, as a mother, to think and dream bigger, knowing nothing is truly impossible. And clearly, this is what they love to do!
Do You Need Assistance?
The CureDuchenne Cares travel assistance program is made possible by sponsorship from industry partners. Team Joseph and the Little Hercules Foundation organize fundraisers throughout the year to raise money needed to fund the Duchenne Family Assistance Program and the variety of services they offer including travel assistance. Please contact these organizations if you need help. They are passionate about doing whatever they can to help ease the burden of Duchenne and removing barriers preventing individuals and families affected by DMD, from living the best quality of life possible.
You Can Help Too!
Did you know there are many ways you can raise money to help your fellow Duchenne families? One of the simplest ways is by posting a birthday fundraiser on your Facebook page. How simply brilliant is that? Kylee Groon, CureDuchenne Cares’ Senior Programs Manager, makes it so easy by sending you a link to a tool that guides you through the process. With only a few clicks, your fundraiser is set up and ready to go! If you’re interested in fundraising for CureDuchenne on Facebook, just send Kylee a message and she’ll provide you with everything needed to get your fundraiser up and running.
Click the logos shown below to learn more about fundraising and other ways you can help each of the organizations.