The Alderson family started looking into the third open heart surgery for their son, Noah, over a year ago. His first surgery took place when he was just four days old. His second was at the age of two and now that he’s four and a half, Noah’s mom Tanasha Alderson says she’s seeing signs that time is running out.
“He’s getting tired and he’s up to five liters of oxygen a day,” she says.
Noah’s medical situation can be seen as a stack of complex layers, similar to Russian nesting dolls in that each layer gets increasingly more detailed while still retaining the same exterior appearance.
For starters, there’s the oxygen tank, the nebulizer, the trach tube, the ventilator, and the feeding tube. In layman’s terms, it’s a lot. Noah was born with a medically fascinating anatomy: he has three-quarters of a heart that faces in the wrong direction and a stomach that lies on the opposite side of his body — a condition known as heterotaxy. All the cilia (those tiny hairs that sweep away bacteria) in his lungs are dead, so reducing exposure to germs is crucial.
Occasionally, a seizure will come at night, and since Noah can’t make any cries for help (because of his trach, he communicates via sign language), they come quietly. Which means, four nights a week, there’s a night nurse in Noah’s room. On the other days, one of Noah’s parents is always on night watch duty.
It can be challenging enough to get out of the house with a healthy kid, so consider what it takes to leave the house with Noah and his machines — not to mention his three other siblings.
Noah spends 9 months of the year staying home in Spokane, Washington. By default, his family does too. This dilemma alone was perhaps one of the most nerve-wracking to consider when Noah’s parents learned he wasn’t a candidate for surgery at Seattle Children’s Hospital. He was, however, a candidate for surgery at Boston Children’s Hospital.
The only problem: Boston Children’s Hospital is 3,000 miles away from Spokane. Sitaram Amani, the director of the complex biventricular repair program at Boston Children’s, reassured Noah’s mom that he knew they could operate on her son, but he didn’t know how the family would get him to Boston.
Because Noah depends on the aforementioned machines and tubes to keep him alive, a normal vehicle is not an option for the family to get him to Boston. A commercial flight or angel flight isn’t an option either, due to Noah’s oxygen needs and the risk of exposure to germs before such a big surgery.
An RV, the family decided, would be their only hope to make the 6,000-mile round trip journey. Noah’s mom got to work — setting up a GoFundMe account to help raise funds for an RV rental and trip expenses like gas and campground fees, as well as creating a Facebook page and Instagram account to help spread the story of her son, Noah the Brave.
Friends and family members reached out to the local KHQ TV station with the goal of reaching a larger audience — and reach it did. Once the story was up online, Outdoorsy RV owner Megan Dardis-Kunz posted the link in the Outdoorsy RV Owner Community Facebook group with the caption “Delete is not allowed.”
When the post reached the attention of Outdoorsy’s CEO Jeff Cavins and Seattle RV Adventure’s Sebastian Bularz, the two sprung into action, teaming up to help get Noah and his family get to Boston. Bularz went out and bought a brand new 2019 Class C Jayco RV for Noah, going the extra mile to have the RV upfitted with an inverter and a backup generator — to ensure an electrical outage is never a concern for Noah.
“The team at Outdoorsy is incredibly honored to extend a helping hand to the Alderson family,” Outdoorsy’s CEO Jeff Cavins says. “The minute we read the news about Noah and learned about the Alderson family’s special need for an RV to transport him to Boston, our team knew we had to help take this worry off their plate. Thanks to the help of our strong and supportive RV owner community, Outdoorsy will be covering the RV rental, mileage, insurance, and gas costs for the Alderson’s trip.” The company, Cavins added, will also be covering the costs of hotel lodging for the duration of the family’s stay in Boston.
Outdoorsy’s partner, Kampgrounds of America (KOA), enthusiastically agreed to cover the costs of the family’s campground stays along the way. Outdoorsy team members have also been working on a fun trip itinerary to help the family make the most of their trek across the northern U.S.
“This offer has given our family so much to look forward to and has eliminated so much worry and stresses that we had about making this trip happen for our little boy,” Tanasha Alderson says. “As a mom, knowing there were options for his heart but that they were 3,000 miles away on the other side of the U.S. was a lot to add to our plate; a plate that is already full of the fears about his life and condition. We knew as parents that we needed to get him every opportunity for saving his life as we possibly can and Boston Children’s feels so confident they can help him. The question of how do we get him there has been on my mind many sleepless nights. God has heard our prayers – even the silent ones we never mentioned.”
If you’d like to help support Noah and the road he has ahead, please visit gofundme.com/noahalderson. Follow along and share in the family’s trip to Boston on Facebook @NoahtheBrave and Instagram @noah_the_brave.
