Organizations that help us with medical travel
My little fighter is turning 3 and I have literally said this a million times, "I cannot believe it." I will probably say that every year. She has definitely worked so hard these first few years of life, and she's had so many mountains to climb. Unlike most other 3 year olds, this one has spent hundreds of days in the hospital, has had 12 surgeries, many tubes to get her to grow, the list goes on and on. She's had to fight to breathe, fight to eat, fight to grow, fight to walk, and fight to remain home. You can always read more about us & why we share our journey. We are really proud parents. We had a little birthday party with family and she got some gifts, but so many other's have asked us what they could give Adeline for her birthday. It warms my heart that people want to celebrate her so I thought we could give back to some of the organizations that have helped us through our journey. These organizations listed below are one of the reasons we are able to go back and forth to Boston each month. In honor of Adeline's 3rd Birthday, I'd love if you could donate to one of our Earth Angels.
Children's Flight of Hope
Children’s Flight of Hope provides air transportation for children to access specialized medical care. Once approved, CFOH purchases commercial airline tickets for the child and one companion (or two companions if the child is under 2 years old and considered a “lap child”). This is our new favorite organization and we would have used them sooner but for awhile they were not accepting new applicants. Basically we apply for flight, pick a general time, and CFOH books Adeline & I tickets to fly. We still pay for John's ticket, but this saves us a ton.
Angel Flight NorthEast
Angel Flight Northeast is an organization that coordinates free air transportation for patients whose financial resources would not otherwise enable them to receive treatment or diagnosis. They provide air transportation in private aircraft by volunteer pilots so that children and adults may access life saving medical care free of charge. The Earth Angels generously donate their time and vehicles to transport patients to and from the airport / medical facilities. Angel Flight is also a vital mode of transportation for organs, blood and for patients awaiting organ transplants. We've used this organization a few times and not only is incredibly helpful it's also amazing to not have to go through regular security with all of our medical equipment. It's much easier when you fly private and we get to feel a little fancy.
We use this organization nearly every time we travel to Boston. Basically Hospitality Homes is a nonprofit organization that provides short-term housing in volunteer host homes for families and friends of patients receiving medical care in the Boston area. I always tell people it's like an AirBnB in someone's home, except only for family's traveling for medical care. The first time we stay in Boston we stayed at a hotel close to the hospital with a medical discount and it was more like a $300 per night motel with smell of stale cigarettes. There were other times we tried to find hotels but because of sport events or conferences, the city was 80% sold out and we could not find a room for less than $550. Using Hospitality Homes also allows us to spend less on eating out since the place we often stay has it's own kitchen. We love them!
Our Medical Travel
Medical expenses are no joke. We have high deductibles, out of network expenses, non- prescription items she needs monthly, therapies, and now we have greatly added to our medical expenses by traveling out of state for medical care. Every 4-6 weeks, we travel to Boston Children's hospital for medical treatment. If you want to know why we travel for medical treatment, we've got a good story for you.
Every 4-6 weeks, we pay for airfare, accommodations, food, Uber, parking, pet care for our dog and cats, the list goes on and on. Insurance does not cover cost of travel. So about once a month we go on a "vacation" minus the fruity drinks, warm beaches, and the fun.
Since the beginning of Spring, we've had to make more frequent visits to Boston sometimes we turnaround times of only 2-3 weeks. This causes the cost of flights to skyrocket when you book right before you fly.
We have been so lucky to connect with an incredible Non Profit organization Little Superheroes. This foundation not only helps families facing long term medical issues but in particularly families with children who have serious, life threatening GI issues.
Little Superheroes was founded by Christie Kessel, a fierce mother of 4 year old Valerie who had a bumpy start to life. Valerie was born prematurely, had difficulty tolerating any food, and. after what seemed like thousands of tests, emergency surgery, medications, holidays spent in the hospital and innumerous doctors’ visits, Valerie was finally diagnosed with Chronic Intestinal Pseudo-Obstruction (CIPO). At nine weeks old, Valerie had her first central line inserted into her chest along with a permanent feeding tube and an ileostomy.
This year, Adeline was awarded a grant!!!! In addition, she was the first recipient to live outside of the state of Iowa. We are so grateful for these organizations that help support families that really need it. Boston has literally changed Adeline's life, and Little Superheroes has helped make Boston possible.