travel funds…only helpful for those predictable diseases?

Nora Murphy — Mon, 25 Jan 2010 10:21:07 +0000

For those of you who are new to this website, my son has JORRP, which you can read about here, and you can read more about his story here.

Ayrie’s breathing is deteriorating. I don’t know if it’s regrowth of the papillomas blocking his airway or a side-effect of the medicine he takes. I don’t want to goto the local hospital where they know nothing about this disease and have them admit ayrie, run a lot of tests that don’t give them the right information and then force me to sign him out against medical orders.

So we are flying to Boston today for an emergency surgery in the afternoon. I only had twelve hours notice. (Thank you, Dr. Hartnick, for being so accommodating!) Cost for plane tickets? $1800. So I called agencies that help people who have to travel more than 1,000 miles for medical treatment and you know what they all told me? They need a month’s notice! Seriously? For people who have diseases that are predictable!!?? Yes, they said. There are papers to be faxed in, signatures to collect. I said, if I could plan around this disease I would still have a full time paying job. If I have a job with a good salary I wouldn’t need to call you for help. Aren’t we exactly the type of family that you are supposed to be supporting? (ie. our lives are turned upside down by a rare disease and we have to travel to get care that helps our kids rather than harms them and we never know how we are quite going to make all of this work)

It’s ludicrous and I’m mad. This is what happens all the time. I am told, “Oh, there are so many grants/supports for families in your situation.” But when I actually try to access the grants/supports that are barriers that make everything inaccessible. I feel like half of my time is spent managing the non-disease portion of this disease.

Okay. That’s my rant for today. Thanks for reading!

nora

Make traveling a reality with a travel companion for your family

Nora Murphy — Mon, 11 Jan 2010 20:04:34 +0000

Okay, I know. With medical bills and other health related expenses, it’s hard to think about taking a vacation! But if possible, it’s also wonderful to relax together as a family, in an environment that takes the focus off of the illness or disease and puts the focus on enjoying the moment. But for any number of reasons, a relaxing location may not be enough to create a relaxing experience! I know that as a single mother of two, one with JORRP, travelling can be so daunting an idea that I don’t even entertain the though. But I just came across this website and I think it’s a fabulous idea!

Mission Statement:
Our mission is to provide a range of supportive services that will enable all family members to enjoy a travel experience. We understand the many joys and challenges of the everyday lives of children with special needs and recognize that travel can be both a rewarding and difficult adventure. Our hope is for families who never thought that a family vacation was possible will now be empowered to plan one and learn differently.

This organization will travel with you and support, not judge, giving you time to be a family, or to even have some alone adult time on one-on-one time with your different children. For more information, check out the website! http://www.specialtravelers.org/index.html

I tagged this as a gift idea because if you are a friend of a family with a pediatric disease and they are going on vacation, perhaps offering to help pay for this service would be a welcome gift!

Rare Disease Support » Travel

travel funds…only helpful for those predictable diseases?

Make traveling a reality with a travel companion for your family