Traveling With A Rare Disease

Our kids deserve a childhood filled with joy, laughter and happy memories. Vacations, even day trips, can provide such a source of fun and escape from reality. But, traveling even short distances with a child who has a rare disease requires some extra planning. For my son with Duchenne, this means planning for frequent urination. Because rest stops aren't always nearby, I now keep a toddler urine receptacle in my car at all times. 

Our upcoming trips include a mix of local and out of state travel. During spring break, we'll be heading to a nearby aquarium. I'll be sure to provide for sitting breaks and I always bring a water bottle for hydration. Don't let signs that prohibit food/drinks deter you; explain that your child has a disability that requires hydration and assure the employee that you will be careful not to spill. Another day trip on the spring break schedule is indoor skydiving. What better experience for my son with fatigued legs than to experience weightlessness? 

More extensive travel for us comes later in the year with a trip to Disney. When booking my flight, the carrier's ticketing process asked if there were any special needs. Be sure to look for information like that. I've started the process of navigating Disney's disability access program and will be sure to take advantage of everything possible to make the trip easier for my son and me. I will definitely be bringing his stroller (though there are several stroller rental companies near Disney). My son takes 2 medications each morning and will only take them mixed into 2 specific drinks. I will plan ahead with a grocery delivery company to have these drinks brought to the hotel for our stay. One item I still need to research is traveling with liquid medications.

With some thinking ahead of time, I'll be sure to take care of all my son's needs to ensure we have fun-filled trips with memories to last forever!