I can not say enough about how perfect the Make-A-Wish trip was or about how amazing and kind each and every person - from the MAW staff and volunteers, especially Stephanie, Michelle, and Tobi, to Maggiano's Little Italy restaurant staff and theme park and resort staff members. All the way around, it was the experience of a lifetime and everyone involved worked hard to make it wonderful. Gabe was lucky enough to be treated to a Wish Enhancement Dinner from Maggiano's at Southpoint. Check out these fantastic photos on Make- A Wish- Eastern NC's Facebook page!
When we were invited to the
dinner, we expected something small – just a quiet dinner with my in-laws, our
Wish granting volunteers, and maybe a Wish Coordinator to go over the details
of our itinerary. If I’d known what was in store for us, I would have dressed a
little more nicely! What they did for Gabe was beautiful. A dining room decorated in a safari theme was
set aside for our party and Maggiano’s staff volunteered their time to serve us
the most delicious three course Italian dinner. The hostess, LeeAnn, looked adorable
dressed as a safari guide and Gabe had an almond safari Mickey Mouse cake that
tasted every big as good as it looked. I was moved to tears several times
through the evening and everyone had a lot of fun. Then, they sent us away with
leftovers! There was enough there that we froze them and made really yummy dinners
for a week!
For a few days before the
Make-A-Wish dinner, Gabe had begun complaining of stomach pains and feeling
unwell. He’d run a low-grade fever at school that had responded to
acetaminophen and stress dosing his hydrocortisone. We thought at first that
the stomach pain might be attributed to digestive issues. During the dinner,
though, he would have to take breaks and go stand outside the room because his
stomach was hurting and he didn’t feel very good. We encouraged him to slow
down on the cheese but nothing could deter him from scarfing those mozzarella
sticks that he loved like they were going out of style! By the end of the dinner, he was feeling rough (all that cheese, I wondered) and the next day he
started to run a low-grade fever again. When his symptoms responded to stress
dosing, I decided that it was time to call the endocrinologist about my concern
that the stomach pain and spotty fevers were the beginning of an Adrenal
Crisis.
His Endo agreed. Gabe has grown a
good bit over the last year and he looks healthier
than ever, but his daily hydrocortisone dose has been the same for a long time. The endocrinologist increased his dose from 5mg three times a day to
10mg in the morning, 5 in the afternoon, and 5 at night. She is keeping the
fludrocortisone at 0.5mg once a day for now. That did it! His symptoms resolved and Gabe was back to
feeling good.
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| Gabe sits on dad's shoulder to see the planes |
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| Gabe is excited about the flight |
As we counted down the days to
Gabe’s Make-A-Wish trip, I couldn’t tell what he was most excited about: flying
in an airplane, staying at The Animal Kingdom Lodge, going to Disney, or riding
the big rollercoasters at Sea World and Universal. As we waited at RDU for our plane to board, Gabe watched the planes taking off and landing.
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| Gabe and Cai at RDU airport |
Despite how excited Gabe was about flying, he found it more scary than he expected. He sat with his daddy on the
flight to Orlando and with me on the way home, but both there and back he got airsick and asked us to close
the window blind so that he wouldn’t feel nauseous and nervous. Our Southwest staff were very nice. They gave
the kids first flight certificates and let them take turns sitting in the pilot
and co-pilot seats.
When we landed, we saw someone holding a sign and thought
“Oh, that’s nice. They’re waiting for someone…” Then I read the sign! It said
“Kornegay Family!” They were waiting for US to guide us through the airport to
baggage claim and to our car rental! I’ve gotta say, that was a special touch,
Make-A-Wish!
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| The view from the Kilimanjaro Club |
The photos on-line of The Animal
Kingdom Lodge do not do it justice. It was GORGEOUS. The attention to detail
was perfect (light shades that were really drums, carvings and ornaments to be
found in every nook, thatching and architecture that made you feel like you
were in a fairy tale version of Afica), the staff was incredibly kind, and there were African Artifacts everywhere. And
the animals! Our room had a balcony that was right over the “savanna” and the
giraffes could have walked up and licked our faces if they’d wanted to. I’ve never had the privilege of staying in a
luxury resort before, but anywhere else of this caliber I would imagine that I
would feel like the children needed to be subdued, stay at my side, and don’t
touch the nice things on display... You know the type of best show behavior I’m
talking about. But this was Disney! It was designed for children and the
child-at-heart! Not only did I feel totally comfortable letting the kids
explore, but the sight of all of the children running around being children and
enjoying all of the activities that the Lodge offered was incredibly
joyous.
Our first day in Orlando, we had nothing scheduled besides exploring the resort, so we planned to head out in the evening to Downtown Disney and the giant three-story arcade there. If there is anything Gabe might love more than food and sports, it’s video games (though it’d be a tough call between soccer and the X-box). We were on our way out when the kids decided to go up to the fifth floor and walk across the suspended bridge over the lobby. From there, they thought that they could see a cave up on the top level, the 6th floor. They came down to get Cutler and I and up we went to check out this “cave” together. We had to scan our magic bands to get to the 6th floor and when we stepped out of the elevator, we were greeted by a polite concierge desk who told us that many people think they see a cave but that this floor is the restricted club level. As we made our apologies, one of them asked about the celebration buttons we’d been given at check in. We explained that we were celebrating Gabe’s Make-A-Wish trip: his wish had been to stay at Animal Kingdom Lodge and he gets to visit the parks as well.
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| Gabe and Sam, our Disney Genie |
Sam, the club level concierge,
seemed surprised that his wish had been, specifically, Animal Kingdom Lodge.
Most of the time, kids wish to go to Disney and they stay at this really neat
place for Make-A-Wish kids called the “Give Kids the World” village. But, Gabe
had wanted to feel like he was going on safari in Africa, so his wish had been to
stay at Lodge. After a bit of chatting Sam asked us to stay there at the desk
and disappeared. When he came back a little while later, he had a very special
gift for Gabe: he’d gotten permission to give our family club level access for
the week! We had a healthy breakfast every morning (their oatmeal with
blueberries and jungle juice was divine), snacks (oh my, that coconut lemon
pudding!), tea time, cordials… But best of all, Sam became Gabe’s special
friend for the week. They fought light saber battles right there in the lobby
and club lounge and Gabe, for all his shyness with new people, really looked
forward to seeing him every day. I hope
that Sam got some recognition from Disney for what he did for us. He added the
extra dose of magic to our trip that made it truly unbelievable.
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| Cai builds a fort in the Wish Lounge at Magic Kingdom |
Gabe had some trouble dealing with
the strenuous activity and heat visiting the parks every day, so we learned a
new way to visit thanks to some of the experienced parents in our ALD support
group. (What I would do without these people, I don’t know. I’ve never met most
of them in person, but their support and advice and stories have made ALL the
difference in how we have been able to handle ALD). The first full day of park visiting we went
to Magic Kingdom and Gabe got tired, over-heated, and felt faint about 2 hours
in. We took him to the Wish Lounge to cool off and recharge and play with
another wish family and their two children. Our teenaged daughter, Cai, is
great with little children and she built a fort for the kids out of cushions. When he was feeling better, we went back to
the resort to rest, nap, and swim. Then, when we headed back to the park, we
used a wheelchair for Gabe. Cai was very helpful and volunteered to push him
around. It made her unhappy to see him in the wheelchair because she doesn’t
like the idea of him being in one, but she liked pushing him and he liked
learning how to wheel himself around (though we had some close calls with
pedestrians and ramps). The chair helped
immensely. He was able to take it easy and stay out much longer. We repeated
this pattern of going for a few hours, coming back to nap and swim, and going
back out until late at night for the rest of the week with the other parks.
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| Gabe learns to drive |
The highlight of our trip at Magic
Kingdom was getting stuck – TWICE – and “evacuated” from Splash Mountain. What
an adventure! Cai was particularly excited because we got to go through some of
the behind-the-scenes tunnel system that she’d read about. The second time we
got stuck, us and another family got everyone on the ride singing Disney songs!
There is nothing quite like belting out “Part of Your World” and “Let it Go”
with a bunch of strangers as Disney staff in adorable costumes “rescue” you
from a water ride. It was SO much fun!
Since he didn’t get the genie pass
to let him go to the front of the line on rides because we didn’t stay at Give
Kids the World, Disney customer service hooked us up with fast passes! He went
on the Mission:Space at Epcot over and over again, loved the Tower of Terror at
Hollywood Studios, and Expedition Everest at Animal Kingdom. He had to ride every
rollercoaster in every park at least once. Each day, he bee-lined for the water
rides and rode them as many times as possible, delighted in my [exaggerated for
amusement] reluctance to get soaking wet. Our favorite was the Rip Roarin’
Rapids at Universal, but the Atlantis ride at Seaworld was pretty darn good with its
surprise ending.
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| Safari Jedi Gabe |
Gabe got to take the Sunrise Safari
at Animal Kingdom and see all of the animals except the elephant (bummer –
that’s his favorite) up close. He. Loved. It. We even got another look at
Disney backstage (no pictures allowed). After the safari, we had a HUGE buffet
breakfast that kept us all stuffed for the day. He liked the space ride at
Epcot the most and made himself a cool double bladed lightsaber that he used to
beat Sam and his single bladed lightsaber in unfair fights.
Our resort was a theme park in
itself with pools, water slides, hot tubs, night time animal viewing with
military grade nightvision goggles, drumming lessons, Disney movies… Gabe and
Cai spent as much time as they could at the pool making friends and sliding
down the water slide and I spent as
much time in the hot tub as I could.
We met some interesting people who were staying there, as well, but the most
inspirational was a geneticist who talked to us about epigenetics and the
stunning new advancements in genetic disease therapy! You guys, it’s like
science fiction! They’re going to cure this thing one day in the
not-too-distant future.
When I say that everyone went above
and beyond to make sure he had an incredible trip, I mean it! The staff of
Make-A-Wish, Maggiano’s, Disney, Universal, and Seaworld were all working so
hard and being so kind to give him such a wonderful week. At Universal, he got
a guide who brought him to the head of the line and characters all made sure
that he got to meet them. I think his favorite part was climbing the alley
wall.
Now the not so great part: dealing with the unexpected aftermath. Since we
got back, Gabe has begun to understand what ALD is in terms of how it could
affect him personally. He saw the trip as a once-in-a-lifetime thing that he
figured must have been given to him because he’ll never have the chance to do
it again. He's afraid that it means that he won't live to grow up and have a family of his own. We explained that it’s not like that and talked about the power of positive thinking. Plenty of children who have
been granted wishes go on to lead long lives. It doesn’t mean he’s dying; it’s
a break for kids who have to spend so much time dealing with a scary illness. It’s a chance
to get away from all the stress. And it was! It was so amazing that none of us
wanted to come home! If we could, we'd move right into one of those sweet little
houses at Disney and stay there forever! But the weight of his own mortality is weighing heavy on him
and it’s made him anxious and angry over the past few weeks.
The tipping point was when, shortly
after our return home, we started (a little overzealously) making him wear a helmet to play any sports
because of evidence that head injury can lead to cerebral demyelination in boys
who previously had none. Gabe plays rough sports. Hockey and Soccer, especially, make him
feel powerful and strong in a time when his life is uncertain and things are
beyond his control. Gabe has always responded well to bluntness – we’re a very
straight-forward bunch. He didn’t this time. He cried and fought with me – to
my utter consternation – over helmets for soccer. He is afraid that other kids
will laugh at him. “You wear a helmet or you don’t play” is what I finally said
in frustration. And he agreed to do it. And I thought that was that and he was seeing
sense. But, instead things just got worse and every loss of control or every
moment of unfairness (being an inch too short to drive the go-karts when his
sister and friends could) became a symbol of the injustice of the world and he raged against it. Then, I finally understood that he
wasn’t mad about not driving the go-karts, he was mad about the unfairness of
having ALD. I found this out when he finally yelled “It’s not fair! SHE (his
sister) can drive them! SHE’S tall enough. SHE doesn’t have a stupid disease!”
My heart broke for him. In the days that followed, we finally made emotional progress.
I’m grateful for my son’s
self-awareness. We sat him down and talked to him about the change we’ve seen
come over him in the last few weeks. He told us about his fears of dying before
he’s thirty and that he’s been really worried since I told him about needing to
wear a helmet. He fought me on the helmet because he’s frightened. He’s already
hit his head many times playing soccer and hockey and he was afraid he’d caused
himself, by playing the rough sports he loves, to get lesions. We told him about all the times he’d
bumped his head – even gotten concussions and stitches – as
an adventurous small child. He climbed everything as soon as you turned your back and
promptly fell off. And never, in eleven years of bumping his head while he played, had he
developed lesions. His MRIs are still clear! It may have happened to others,
but it never happened to him and his doctors think it probably never will. He needs to be careful, but he also needs to have hope and be positive. It was tough for me. I'm not used to this completely reasonable emotional response of anger. When Cutler had cancer - once, twice, three times - he was frightened but hopeful and optimistic. He became more spiritual, not angry. I understand Gabe's feelings, but learning to help him through them is new for us. Gabe thinks it would help him to hear stories about men with ALD and AMN who grew up and are doing well. I am thankful
for my ALD family for sending stories of their fathers
– some of them middle aged and totally asymptomatic - to inspire him.
I never thought I’d understand some
of the choices that other parents have made that picked what we call “quality of
life” over every possible protection. How dare Dr. Raymond suggest to me
that “quality of life” may be more important than making sure we take every
precaution – even the slim chances like taking Lorenzo's Oil and following a very restrictive diet for a child who is technically clinically too old to see the benefits - to
give him the best chance to grow up?! I would get so frustrated when I heard that other parents made calls that I never thought I would and couldn't understand. But now I understand what they all meant by "quality of life" and what the neurologist meant when he told me that I must weigh the cost and benefits of life style and activity choices. We have to choose well for our children and not take unnecessary risks, but we have to find the balance. Living in fear and precaution is not living a life.
Helen Keller said it best when she said "Security is mostly a superstition. It does not exist in nature, nor do the children of men as a whole experience it. Avoiding danger is no safer in the long run than outright exposure. Life is either a daring adventure or nothing at all."
Helen Keller said it best when she said "Security is mostly a superstition. It does not exist in nature, nor do the children of men as a whole experience it. Avoiding danger is no safer in the long run than outright exposure. Life is either a daring adventure or nothing at all."
Each of us on this journey with ALD must make the best choices that we can for our children’s
health and safety and sometimes those choices don’t make sense to others on the surface. Gabe will have to wear a helmet when he plays hockey (everyone else does, too) and I'd still like him to take extra precautions and wear one when he plays other sports, but I had known how demoralizing the argument about the helmet would have been
coming right on the heels of his Make A Wish trip and how it would solidify the
fears he’d begun to develop, I would have backed off. And maybe I would have
made the same choice that other mothers have made (which I didn’t understand at
the time) and not been so open with him about ALD from the beginning.
Gabe's story is a story of hope. I hope he can inspire other families who are fighting this terrible battle and newly received a diagnosis because that first year is terrifying and I can't imagine the desperation my family would still feel today if it hadn't been for finding a family of other ALD kids, parents, and grown ups. Gabe is doing great and I think that because the internet is so full of stories of boys who aren't doing great, it's important for others to see a boy like him who IS! I just hope that he sees and believes the inspiration in his own story.
