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  #1  
Old 04-16-2012, 12:32 PM
ppilotmike's Avatar
ppilotmike ppilotmike is offline
 
Join Date: Jan 2010
Location: Denver, CO
Posts: 2,013
Default VAF "Make a Wish" Request..

I am writing to ask for help from the VAF community for a special 15 year old kid I know. His name is Alex Cuellar and he is currently battling an unknown type of malignant brain tumor. Here's some pictures and a brief bit of his story, from his mother, Michelle:
https://picasaweb.google.com/1094144...51422752806482
https://picasaweb.google.com/1094144...51423410013986
https://picasaweb.google.com/1094144...95420233493906
"Alex was born to proud parents, Michelle & Alejandro Cuellar, on August 29, 1995. On August 16, 2011, he was diagnosed with a very rare malignant tumor in the brain called Atypical Terratoid Rhamboid Tumor (ATRT for short). The doctors began very aggressive treatments using chemotherapy and radiation. Alex was hospitalized for several weeks with complications. His blood cell count dropped so low, that he had to receive multiple blood transfusions. As if to add insult to injury, genetic testing later proved that it was not ATRT, but an unknown malignant brain tumor. The doctors determined Alex could no longer be treated with chemo, because it made him so sick, and suggested immunotherapy might be the only option. Luckily, before immunotherapy treatment, the doctor called for another MRI. The tumor had stopped growing. They decided to stop all treatment and let him heal. Alex continues to get MRI’s every 3 months to make sure there is no tumor growth. His big challenge right now, is to gain weight. He currently weighs only 96 lbs. Getting back to his “normal” weight will be a slow process, because Alex has difficulty eating solid foods. He is only drinking instant breakfast shakes and eating soups. Before Alex was diagnosed, he was enrolled in flight school, earning hours towards his private pilot's license. He wishes to get back into flying, so gaining his strength back will help. The other problem is that this tumor was pressing on the third nerve, so he had vision issues at first, but it seems to be recovering. We hope that it fully recovers, because Alex wants to become a commercial pilot when he grows up."

Alex is a good kid, who loves airplanes. When he heard we were building an RV-10 in our garage, just had to come and see it. I conducted a short "Aircraft Building 101" course for him in my shop. I taught him how to measure, match-drill and drive all types of rivets using various methods. I showed him pictures of all the planes you could "build by yourself" in my Vans Book of RVs. Then, as is always inevitable when people like us talk about experimental aircraft, we talked about Oshkosh. As an EAA member, Alex was already on top of it, rattling off all kinds of information about this year's event. I asked if he'd ever been to OSH. He answered "no", and said it probably wasn't financially possible. I asked, "if you could go, would you be healthy enough to go?" He said he would certainly try. I told him "don't give up" and "if you can get to OSH, I promise you won't be disappointed." As he left, Alex told me he would ask the "Make a Wish" people, and that hopefully he would see me there this year...

My request is simple.. Assuming he can keep getting better, and that his doctors and parents sign off on it, is there any way we can get this kid to Oshkosh this year in an RV?
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Mike Rettig
EAA Chapter 301 www.eaa301.org
VAF Dues Current
RV-10 - Working on engine / prop installation
http://www.mykitlog.com/users/index....ig&project=803
F-14 (Pedal Plane - Daughter's Project) "Flying"
https://www.youtube.com/watch?v=zKCyX2FXrlw

Last edited by ppilotmike : 04-17-2012 at 10:43 AM. Reason: Added Picture Link
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  #2  
Old 04-16-2012, 12:55 PM
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DakotaHawk DakotaHawk is offline
 
Join Date: Oct 2008
Location: Arlington, WA
Posts: 801
Default

(I'm assuming from your profile that Alex is from Denver, CO)

This sounds like a great idea! Seems that there would be a list of "opportunities to volunteer"...

1) Flight from Denver to Oshkosh
2) companion to accompany Alex while at Oshkosh (wheelchair?)
3) Overnight accomodations (camping in Camp Scholler, homebuilt camping, or local hotel)
4)Return flight from Oshkosh to Denver.

Some questions that would need to be answered...
1) How mobile is Alex? Does he need a wheelchair or walker?
2) What dietary concerns would need to be dealt with? Food at the food courts aren't the healthiest!
3) How long a visit can Alex handle? Are we looking at one day, three days, or the full week?
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Scott "Grumpy" Stewart
RV-7 N957RV (First Flight on Dec 18, 2009)
RV-14 N144P (First Flight on Apr 17, 2021)

Arlington, WA
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  #3  
Old 04-16-2012, 01:04 PM
ppilotmike's Avatar
ppilotmike ppilotmike is offline
 
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Location: Denver, CO
Posts: 2,013
Default Ball Rolling...

Scott,

All good questions. Here's my attempt at answering them.

1) How mobile is he? When he came to my shop, he was walking and standing while working. However, he needed to take breaks to sit (before falling) due to fatigue and nausea. He's on the mend, and will likely be walking fine (at a slow pace) by OSH time. I would imagine the trams and buses will be used to get around on long hikes.
2) Dietary concerns? Hopefully by then, he will be eating solid foods more regularly. He will likely need suppliments of some sort to keep gaining weight and strength. No burgers I'm guessing, but perhaps a soft-serve or two..
3) How long a visit can he handle? I'll have to check with his parents for this. It may be more dictated by his doctors than him. He'd probably go till he drops...
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Mike Rettig
EAA Chapter 301 www.eaa301.org
VAF Dues Current
RV-10 - Working on engine / prop installation
http://www.mykitlog.com/users/index....ig&project=803
F-14 (Pedal Plane - Daughter's Project) "Flying"
https://www.youtube.com/watch?v=zKCyX2FXrlw
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  #4  
Old 04-16-2012, 01:47 PM
TS Flightlines TS Flightlines is offline
 
Join Date: Apr 2010
Location: Ridgeland, SC
Posts: 2,928
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mike---you are an awesome guy for thinking of this young man and his dream.
I'll bet there is someone with a RV10 that could take him AND a parent/guardian to OSH. I bet that facilities could also be arranged for camping, food. etc/ The VAF family has always come up with 'out of the box' solutions----and I bet this is another one. If I had a 10--i would.
Tom
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Tom Swearengen, TS Flightlines LLC, AS Flightlines
Joint Venture with Aircraft Specialty
Teflon Hose Assemblies for Experimentals
Proud Vendor for RV1, Donator to VAF
RV7A Tail Kit Completed, Fuse started-Pay as I go Plan, on hold while we develop new products for RV builders
Ridgeland, SC
www.tsflightlines.com, www.asflightlines.com
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  #5  
Old 04-16-2012, 01:55 PM
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RBD RBD is offline
 
Join Date: Apr 2006
Location: Tampa, FL
Posts: 406
Default Just want to point out...

that this isn't really a "request".....more of an "opportunity!" I have full confidence that this awesome community will make this happen; and for those that are ultimately involved, I imagine the experience will be even more rewarding for you than it will be for Alex.

With no RV and no plans of attending Osh, not much I can do to help...other than cheer this effort on from the sidelines. So go team go, make this happen!
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Tampa, FL
RV-4 (sold)
RV-8 (sold)
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  #6  
Old 04-16-2012, 01:59 PM
rv7charlie rv7charlie is offline
 
Join Date: May 2006
Location: Pocahontas MS
Posts: 3,888
Default

Great idea, if he can handle the trip.

Here's something that we can all do that's a lot closer to home for all of us, and requires minimal investment of time/money by individual pilots. (Though it requires significant organizational efforts to set up a session.)

http://www.operationprop.com/

If anyone's interested in duplicating the effort, I can put you in touch with the organizer here in MS. Based on what I've seen here in MS, the line from Field of Dreams really does apply: "If you build it, they will come."

Charlie
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  #7  
Old 04-16-2012, 02:10 PM
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tkatc tkatc is offline
 
Join Date: Nov 2007
Location: NJ
Posts: 1,747
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I am not going to Oshkosh this year nor am I in the right region of the country to help out. BUT I could probably help out monetarily if that should prove to be required in some fashion. Keep me posted.
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  #8  
Old 04-16-2012, 02:15 PM
Mile High Relic Mile High Relic is offline
 
Join Date: May 2010
Location: Denver area
Posts: 278
Default I'm sure we can come up with a plan.

Mike,

Tom's thought on a 10 and taking more of the family is really a good one. Even if a 10 can't be found, I bet we can find more empty seats.

I am planning on KOSH this year, but right now I only have an empty seat between Denver (KBJC) and Minneapolis. The current plan is to pick up a friend in Minneapolis, the CFI that taught me to fly, and then head to KOSH. That could change though, or I could just rubber band back to Minneapolis if that is the only option.

I can bring this up at the EAA43 lunch at KBJC on Wednesday, (or you could too) and see what everyone thinks. I know there are a bunch of people planning to go this year.

The RV1 is scheduled to be here on 5/30 and that might be a good time to get everything lined up, while a bunch of the RV community is hovering around Jim Gray's hangar.

Also, I have a brother in Green Bay, and he's is usually willing to put me up for a day or three, as well as whoever I'm traveling with. That isn't exactly the KOSH experience, but it may be better than camping in this situation. Once the planning and requirements firm up, I can check on that if necessary.

John

Last edited by Mile High Relic : 04-16-2012 at 02:25 PM.
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  #9  
Old 04-16-2012, 02:18 PM
Paul K Paul K is offline
 
Join Date: Mar 2009
Location: Grand Rapids, MI
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Don't know if I will make OshKosh or not and I am in the wrong direction. I can make a donation to help if needed.

Keep us all posted.
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West Michigan

Unfortunately in science, what you believe is irrelevant.

2021 donation made, exempt but worth every dime!
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  #10  
Old 04-16-2012, 02:41 PM
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rleffler rleffler is offline
 
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Location: Delaware, OH (KDLZ)
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Mike,

You may want to talk to your EAA chapter and/or Jeff Stiles at national.

As part of Young Eagles, chapters earn credits to send kids to EAA summer camp. If your chapter is active, you can generally cover the camp fees and all you have to fund is transportation.

Some chapters don't allocate their earnings, so national will distribute them too.

I suspect the week of OSH is probably booked, but worth investigating.

bob
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