Life is Short...shorter for some

When our son Hurricane was first diagnosed with Duchenne Muscular Dystrophy at age 5, they told us he might make it to 20 years old. He is about to be 26, and we are grateful.

 

Yet every additional year comes at a cost.  He is losing body mass and is in more pain all the time.  Cane is more and more aware that life is short... shorter for him so he wants to get a few things done while he still can.  Cane has always wanted to travel across the country, and visit Thailand, so his Dad and I are going make that happen.

 

This July, Hurricane and I are taking a 3-week cross-country road trip. Highlights include Denver, San Antonio, and New Orleans, with various stops along the way. He has longed to see the open road, to view the world from the front seat of a vehicle as it travels through majestic lands; to watch the sun set over the Rocky Mountains and meet the friends he has only known online.   Cane has been a "foodie" since he was 3 years old.  He craves BBQ in St. Louis, crawdads in New Orleans. 

 

To make this happen, we need a rent an accessible mini-van where Cane can ride in the front seat and purchase some portable equipment like a patient lift and shower chair.  Then there is gas, food and lodging. The estimated cost is about $8,000. 

In October, Cane and his Dad are going to Thailand.  He wants to enjoy the culture and the cuisine.  Our biggest issue is making him comfortable for the 20 hour flight sitting in an airplane seat instead of his personalized wheelchair.  It's going to be rough for him.  We can improve the journey by putting him is first class.  Estimated ticket price is about $6,000. 

We would appreciate any assistance to make these trips happen. If you'd like to donate miles for hotels, please send me a DM.

We also appreciate your positive thoughts and well-wishes.

 

Life is short but according to Maya Angelou, 

“Life is not measured by the number of breaths we take, but by the moments that take our breath away."