ram3500-RCU

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I would like tell you all about a little guy that is in love with aviation and is enamored with grandpas airplanes. His name is Jackson. He will be 3 in January. Yes, he is not yet three and he is abscessed with anything having to do with aviation, including our beloved hobby. Here is a picture of him so you have a face to go with his story.

His story. At 6 months old, he broke his leg. two weeks later, he broke his other leg. My son and daughter in law were investigated for child abuse by social services, which had an office in Akron Children's Hospital, where they were taking him for care. This passed, and it became apparent that Jackson had a serious medical problem. Here he is about that time, in his apparatus.

After numerous trips to several facilities, while at the Shriner's research hospital in Montreal, it was confirmed that Jackson has a very rare form of "brittle bone" disease. Only about 20 or so kids in the world were know to have it, at the time of his diagnosis, a little over two years ago. My daughter in law quit her job as a physical therapist to attend to Jackson, as he is so fragile that he can not be left with baby sitters, or be unattended around pets, other kids, or himself.

Fast forward, and he has now broken bones more than 60 times!!!!! Can you imagine what he goes through when the weather changes. He has dealt with pain most of his short life so far. It was determined that he get semi-yearly injections of something I can not pronounce, to increase his bone density. This is done at Akron Children's now, and takes several hours of him lying there with an IV in his arm. He takes it like a trooper. The Doctors determined that if something was not done with his legs, he would never walk. So the kids took him out to a facility in Omaha to have stainless steel rods inserted in his upper leg bones. Two trips, one for each leg. The telescope so they can grow as he does. Pretty amazing. Here he is on the plane on one of these trips.

They were allowed to pre-board, so they were the first on the plane. He heard the flight attendants welcoming folks as the came on, so when they got to him, he called out "welcome aboard". It was priceless I guess. When the plane lifted off, he called out "I flyin, I flyin". Most of the front of the plane could hear him and got a kick out of it. Here he is in recovery.

The doctors and nurses let him go through surgery clutching his Buzz Light Year figure, his favorite toy at the time, because buzz flies. Since, he has made good progress with his legs, but continues to break arms, and recently, a lower leg. That does not stop Jackson. Here he is with dad, flying on of the remote helicopters I got for him. He calls them ogcoptors.

Here he is 'working' on some of grandpas airplanes. He always wants tools and loves to tinker. This little guy will fit in to RC quite well.

ram3500-RCU

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Jackson will be off to Montreal in January for more operations to insert rods in his arms.

I got him the latest flight sim so he can fly himself. He wants his hands on the remotes as we fly his indoor helis for him, and is a little shaky on his own. He is remarkable for a 2 year old though. Got him a tandem co-axle heli last week. My son took it out of the box for him. The adults were talking in the living room and Jackson was at the other end. The next thing they knew, the Chinook was flying past them. He had gotten both switches on, got the thing bound and airborne in a couple minutes!!!!! Can't wait to take him to the field and teach him RC. It will be something he can enjoy even in his fragile condition, and he already loves airplanes so.

Here he is with one of his early airplanes.



With mommy.


Recent shots.


With his big sister, who is completely healthy.


I just bought him a little quad copter that is mounted in a cage. Supposedly it can be safely bounced off walls and the ceiling with no damage. I hope to Jackson able to manuver it himself. I know he will enjoy that.

ram3500-RCU

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Oh, did I mention that Cozy cancelled their families insurance policy? Like is happening to so many these days.

Rob2160

A very heart warming story and great photographs. I showed this to my family and the girls just want to cuddle him.

We are sending lots of happy Aussie smiles to Jackson and his family. I'll be in Montreal in Feb myself, Wishing him all the best with the operation. Thank you for sharing.

ram3500-RCU

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Thank you so much. We will keep you all posted as Jackson progresses. He has not walked yet, other than in his tiny parallel bars his therapist gave them. He scooches all over though. I have a lot of amusing stories about him I'd like to share from time to time. He keeps us all in stitches much of the time. His vocabulary is very advanced because he has always been in close company with adults, being held for most of the last two years. He is also potty trained and has been for several months. His older cousins are still working on that. His new favorite movie is Superman, of course, because he flies. :-)

Another picture of him in the hospital after his first surgery.



back at the motel before he was cleared to go home.

DavidAgar

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What a story and such a brave young man. If you would not mind supplying me with an address, via PM, I would love to send him something airplane related to help in his recovery and healing process. If not I understand and will keep him in my thoughts and prayers... Dave

init4fun

The lil guy is in my prayers , and bless you for giving him the aviation hobby to maybe help distract a bit from his condition . I truly hope for the best for him

ram3500-RCU

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Thanks Guys.

I'll send you that address David, and thank you so much for your kindness.

I saw one of these little quad copters mounted in a cage. It is protected from impacts with walls and furniture and thought maybe Jackson could operate it by himself. He always wants the controls :-). Took it over this week. It actually is pretty cool and he can in fact control it, sort of. It has a switch on the front of the transmitter that changes the modes from ground to air operation. I'll get some pictures of him with it and post them..

ram3500-RCU

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Here he is in the Bobcat this summer. He wanted to sit in it by himself, but he wanted his airplane left on the fender till he got back out. You can see it on the left side of the picture. We had just been flying it in the street. :-)

ram3500-RCU

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Been awhile since my last update on my little grandson Jackson and his struggle with the very rare condition of O.I. #6. They have found less than 30 kids in the world with this condition. It is a kind of brittle bone disease. His family has been taking him to Ontario Canada for treatment he can not receive here in the states. The Shriner's hospital up there is pioneering research and treatment for O.I. they inserted stainless steel rods in both his Femurs and one arm to prevent displacements during break cycles. He has broken bones well over 100 times. We lost count. good news is, he is making progress. Here is the report my daughter in law posted to Facebook after this weeks trip.

"The report from the smarty pants hospital regarding Jax's progress is as follows: His bone density is up to -.04 and with 0 being the average w/i the normal range they are increasing the distance between his Prolia shots to every 6mos. His fx rate continues to decrease in frequency, and overall he generally just complains less of bone pain, so I feel comfortable w/ that for now. His height and weight continue to climb on the growth chart, which isn't important and it is at the same time. The PT gave me another healthy dose of chill-out-he's-doing-great, so that always is helpful. Overall, great reports. I love Montreal, but visiting twice a year is music to my ears."

Very encouraging indeed.

Here he is with a broken arm about a month ago. Breaks easy, but the bones heal exceptionally fast, just with no strength like normal bone. He still manages to smile and play.



He loves anything that flys, even if it's not so good at it. This was taken last week.



He loves grandpa's shop, as you can imagine. He is almost 5 now and getting better at the remotes all the time. RC is something he can safely enjoy. I'm glad to be able to share it with him.

We went on a vacation this fall. Guess where.



Grandma let him pick out a hat. This is the one he wanted.



He also loves animals and creepy things.



Here he is at the wedding of one of my daughters. He can now walk, but the wheel chair is safer for extended travel because as he gets tired he falls easier.



Jackson makes all our lives better, and keeps us in stitches.

ram3500-RCU

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I would like to give all my aviation friends an update on Jackson. He is now in kindergarten and is doing well in school. Problem is, his disease continues to haunt him and cause adjustments in how he navigates through life. As careful as everyone is, and his teachers and care people are wonderfully attentive, he is still vulnerable. A couple week ago a little classmate tripped and fell across him as he sat in his wheel chair, breaking his legs. I asked him if he cried. He told me, "I waited till I got out side papa". Anyway, Jax has been approved for a service dog specifically trained to protect him from just this sort of accident. The cost is tremendous. The families part alone is over $17000. A very close family friend has started a fund raiser to help the family obtain this help for Jax. Here is a link to that fund raiser with a gallery of pictures and a little more on the Jackson story. Please look in on the site and feel free to share the site with as many as you can. Many small donations will get this done without being a burden on anyone. All help is much appreciated. I'm going to get Jax out to some events this year to get him flying and will be posting his progress.

The site.

https://www.youcaring.com/jacksonprince-770586