sky kids jj lily johnathan eosinophellic colitis gerd asthma pilot 1

Johnathan the Brave 

By Andrew Vogeney 

 

Working a part-time job can have a lot of perks, most notably for me the paycheck that keeps the gas tanks half full. I work a few nights a week at the Renaissance Phoenix Downtown Hotel, and I’m proud of a lot of the “extras” we get to do for our community. One of them is working with Hope Kids, an amazing organization supporting children with life-threatening conditions and their families. Our general manager recently sent us all an email requesting positive energy for a family we had adopted for Christmas. On top of being a single mom of 3 young kids, Cassandra was also battling pneumonia. I figured, there’s got to be something I can do to make their lives a bit easier. And then I thought, I wonder if the kids might want to go for an airplane ride?

To get a better understanding of this family, I asked mom if I could share their story. She graciously said yes since she wants to raise as much awareness as possible. In her words:

I am a single mom of three children: JJ age 9, Lilly age 7, and Johnathan age 6. Our life largely revolves around doctors’ visits, hospital stays, and medical equipment, so this amazing opportunity to fly will be treasured forever. Memory building is really, really important to our family especially. Capturing smiles on film to treasure forever is something that means the world to me because so much of my time is spent wiping tears and holding back my own. 

sky kids jj lily johnathan eosinophellic colitis gerd asthma pilot 2

JJ was diagnosed at 15 months with Eosinophillic Colitis and GERD, and at age two we added a diagnosis of asthma as well. With this he has severe allergies to 13 foods and takes several medications. He can't go anywhere without inhalers, Benadryl and an EpiPen, and he takes several medications daily. He dreams of being a pilot one day, and has since he could talk. When he found out he was going to get to fly a plane he literally jumped up and down shouting. He has been on cloud 9 since.

Lilly goes through a lot as the middle sibling of two boys with medical issues. She is their rock and is always there with snuggles, blankets, stuffed animals and to sing songs whenever one of them is struggling. She cracks jokes and does a great job of distracting them from their health. This was her turn to be distracted from her self-imposed caregiver role. She said it was one of the best days of her life. She loved every second of being up in the air where "the cars look like hamsters."

Johnathan has something called a Mitochondrial Depletion Syndrome, and secondary to that he has Epilepsy, POTS, asthma, primary immune deficiency, and is completely dependent on IV nutrition, unable to eat. He spends a lot of his life admitted to the hospital and when he is home, his bedroom still looks very similar to a hospital room. Because he has little to no energy stores he uses a wheelchair or walker to get around most of the time. He has to stay nearby to his hospital, and 13 specialists and therapists that he sees regularly… so adventures tend to be far between. It is extremely rare for a child with a Mitochondrial Depletion Syndrome to make it out of early childhood. He knows better than most how fragile life is and as such has a "bucket list." One of the items on it is flying a plane which he is extremely proud to say he has now checked off! 

So you can tell how excited ALL of us were to spend our Monday morning together.

sky kids jj lily johnathan eosinophellic colitis gerd asthma pilot 3

Who wants to go up first? JJ almost couldn’t contain his enthusiasm, so we decided he and Lilly would go together on the first flight. But we have four seats! OK, mom will sit in the back with Lilly. Off we go… everyone doing okay? All smiles! Clear of Chandler’s airspace I had already done enough work, so I let JJ take over. At 9 years old, he’s already a talented pilot! See that mountain peak up ahead? Try to keep the plane flying toward that. After some time exploring the San Tans and pointing out the “islands in the sky,” a nicer way to describe the thick morning haze obscuring distant mountains, we headed for Coolidge... it was clear Lilly was ready for her turn at the controls, so we needed to find solid ground for a quick Chinese fire drill. We shared the pattern with some Oxford students, made a nice smooth landing and taxied to the ramp. We got out and took a quick photo just in time for Jonnathan and Lilly to watch a very organized group of skydivers landing close by and hear the roar of their two Skyvans as they pulled up next to us, shut down and waved us on our way.

sky kids jj lily johnathan eosinophellic colitis gerd asthma pilot 4

Off we go again, and this time it’s 7 year old Lilly’s turn to navigate us home. She must have been practicing, because it was all about the steep turns! Left, right, back and forth, until I heard an apologizing voice come through the headset... “Sorry guys, I think we need to head back to the airport.” Mom is thick-skinned, and you can tell there’s not much that phases her, but we all know the back seat of a “Honda Civic with wings” can be a little tight, and the ups and downs and big turns weren’t helping! We all made it back in one piece and taxied back to the ramp in time to tell Johnathan was more than ready for his turn.

If this day taught me anything it’s that no matter what they’re going through, kids can be super resilient. We knew that, right? Don’t let Johnathan fool you – although his nurse Brianna helped him to the plane in a wheelchair, he definitely wins the award for quickest to board. Usually I have to go through the whole “put your foot here, then turn around and scoot your butt up this way…” nope, Johnathan jumped right in, buckled up and put his headset on before we had a chance to even think about it. He’s truly just like any other 6 year old kid you’ll ever meet!

sky kids jj lily johnathan eosinophellic colitis gerd asthma pilot 5

Excited to have Batman for my co-pilot and Brianna ready in the back with her camera set to go, we launched off again. Headed west we got to see many more of those beautifully hazy mountains. How’s everybody doing? No need to ask, the smiles told the story and there was definitely no need to make this a quick flight. Passing Stellar Airpark we discovered that you could actually live on an airport. How cool is that? It’s been decided – when Johnathan grows up, that’s where he’ll live. Want to see the big airport? Sure! Past South Mountain and right over Sky Harbor we go. The houses are now too small to count, so we switch to counting how many big planes are taking off and landing right under us. Making good time northbound we are able to see Squaw Peak, Camelback Mountain, and Scottsdale Airport… Hey, that’s where all the rich people live! Suddenly the tiny houses are getting bigger and easier to count.

Convinced Brianna has run out of film (do people even use that anymore?) we make our way back over downtown Phoenix (Hey look, we’re higher than the skyscrapers!), Firebird Lake, a few aimless turns toward nowhere and back to meet the rest of the family. Back on the ramp we take a moment to debrief and get a group shot with the plane. In roping in a nearby pilot to take a photo for us, we learn there’s someone with a biplane willing to give some more rides and these might include some upside downs… will mom be sitting that one out?

sky kids jj lily johnathan eosinophellic colitis gerd asthma pilot 6

After a few fun hours, all six of us have been able to see the world from a different perspective today. Who do you think had the most fun?

Follow Johnathan’s story on his Facebook page Johnathan the Brave. There’s also a great book with the same name available on Amazon.

And if you’d like to participate in a really fun day of flying, consider volunteering for Sky Kids. They’ve got two great events lined up this year: April 7 at Goodyear and November 3 at Scottsdale. They accept volunteers of the pilot and non-pilot variety, and I can confirm it’s a great way to spend the day!

If you’ve had the chance to make someone happy with your airplane lately, send us your story! Email This email address is being protected from spambots. You need JavaScript enabled to view it. and we’ll be happy to share.

 

Please login to add a comment.