Forever a Wish Kid

By Simon Staples-Vangel, Wish Kid

I’m writing this post just a few days shy of my twenty-third birthday. It was over eighteen years ago that I was diagnosed with stage IV neuroblastoma, and it’s been almost seventeen years since my Make-A-Wish experience. While that timespan makes it feel like a lifetime ago, I still have vivid memories of my treatment and, of course, my wish. It’s difficult for those who aren’t in the pediatric cancer community to grasp what a child goes through during such an aggressive cancer treatment. No doubt, they know that it is a painful and miserable experience, but they don’t understand the situation from the perspective of a young child.

simonstadiumAt the age of four, I had no idea what was going on during most of my treatment. Sometimes, when asked about going through my treatment, I get the sense that people don’t grasp how little four-year-old Simon understood. During my treatment, I had no clue about my chances of survival, what the various types of chemotherapies and medicines were doing, or the odds at stake when I went in for scans and tests. In a sense, this is a blessing, since no one wants to tell a four-year-old that he or she is going through experimental treatment that might not work. On the other hand, without a firm grasp on the situation, I was extremely sick, constantly in a tremendous amount of pain, being poked with more needles than one can imagine, and being forced to lay still for countless tests and scans. In the beginning at least, I had no idea why, and to me the whole situation was unfair, miserable, and downright boring.

simon-at-racetrackMy wish changed everything. With my parents juggling time between my inpatient stays (we basically lived there), my dad’s job, and time with my older sister, I spent a considerable amount of time with my grandmother, who is from North Carolina. It was through her that I became obsessed with NASCAR and wanted to go to a race for my wish. Not only did I get to go to a race (and a race at the legendary Charlotte Motor Speedway no less!), but I got to meet all the drivers, and even start the race by standing on the track and saying, “Gentlemen, start your engines,” on national television and in front of hundreds of thousands of people. To put it simply, it was one heck of a weekend for a kid who’d just started kindergarten and was too weak to be allowed to participate at recess.

simon-05I often frame this for people by explaining that, while my wish did not literally save my life (I owe that to the neuroblastoma team at Memorial Sloan Kettering Cancer Center), it changed the way that my entire family and I felt about life. I was no longer just a sickly kid. For that weekend, I felt like a true celebrity. Having my wish granted transformed my feelings about my cancer treatment into one positive and optimistic memory. It is for that reason that I have continued to be involved with Make-A-Wish ever since that weekend in Charlotte. Every kid going through such a tough treatment should get that same feeling of empowerment that I was so fortunate to receive, instead of having to sit through it feeling like a victim.

It is for that reason that, upon relocating to Central New York, I immediately sought out the local Make-A-Wish chapter to find out how I could get involved. I promise that you’ll find me at Make-A-Wish events for a long, long time, no matter where I go. Or, alternatively, on any given Sunday, you’ll find me on my couch, still watching NASCAR.

The Magic of Family

By Dena Tadros, Wish Sibling, YPAC Events and Marketing Chair

As the oldest of four children, I have always been taught to be responsible and watch over my siblings in the best way that I knew how.  Whether it meant helping out with homework or fixing an after-school snack, I in a sense became a second mother to them growing up.  To this day, I know that my brother and sisters are not afraid to call or text for advice on new careers they want to explore, how they should set up their resume, or even what to wear on a date!  One of the greatest feelings in the world to me is knowing that my siblings value the life experiences I share with them and that in some way, shape or form, they’ve followed my advice and succeeded in their own paths.

Dena & her siblings on vacation in Las VegasI believe that the truest testament of my family becoming stronger and overcoming a challenge came about when my sister, the second eldest sibling, was diagnosed with Ewing’s Sarcoma at the age of 12.  The entire ordeal of how we arrived from the moment of diagnosis to the need for chemotherapy and treatment occurred as a whirlwind and it was exceptionally difficult to understand anything that my sister was experiencing at the time.  The questions kept coming.  Why did this happen to her? What could be done to make her feel better?

At age 15, the trials and tribulations of adolescence are monstrous in their own right.  I had my studies and extra-curricular activities, and even a part-time job that took up most of my time.  As the months passed and the hospital visits increased, I soon became aware that I had to be strong for the people I cared for most.  And it was when I was left at home with my younger brother and sister that I realized I had a part to play, not only as a daughter and older sister, but as a caregiver.  I truly believe that my can-do and go-to attitude and work ethic is directly attributable to what I felt I had to do to support my family.

Throughout my sister’s treatment, I admired her for having the ability to keep it all together.  We always joked around and she made us laugh constantly; a gift that she has not let go of to this day. One of the fondest moments I have of her time in the hospital was when our middle school art teacher came to visit and brought my sister some sketch pads and art supplies.  What may have been a simple gesture to my teacher was nothing short of a happy blessing to my sister.  Art soon became her passion and her talent and eye for all things, light and dark, sad and beautiful; it was all there for her to capture. Now at age 28, my sister has been in remission for several years and still happily harbors her love for art by opening her own graphic design firm in downtown Los Angeles.  We are all very proud of how successful and steadfast she is in life.

Dena's sister riding the carousel in the Magic KingdomI cannot recall at what point my family became acquainted with Make-A-Wish, but being introduced to such an amazing, heart-warming group of individuals made us feel that we weren’t so alone.  After she was deemed eligible, it was time to decide what it really was that my sister wished for most in the world. Thoughts about possibly meeting her favorite pop-star – Britney Spears – surfaced, but in the end she knew that it felt more right to have her family be a part of her wish.  And so it was agreed upon that our family would travel to Disney World for a couple weeks of pure entertainment, relaxation, and most importantly, being together as one unit.  We met so many characters and enjoyed everything the parks had to offer. It seemed that for a short while, we didn’t think about doctor appointments and who would give my siblings a ride to school.  This mini-vacation was a wonderful gift to us and a memory we will always cherish.

Dena & her family attending the MAWCNY YPAC end of summer bash in August 2016It was not until I recently became involved in supporting the community through my current employer that I would cross paths with Make-A-Wish again.  Under the guidance of my supervisor, I was asked to help support the co-sponsorship of a wish child, which ultimately was a young girl who wanted to go to Disney World with her family.  I immediately jumped at the opportunity to lead the effort and all of our hard work in fundraising and coming up with ways to garner support for this wish child paid off.  Through the co-sponsorship, we had raised enough funds to make her wish come true.  The feelings of pride and accomplishment convinced me that I had the potential to do more for the organization and encourage others to become as passionate and enthusiastic about helping out as I was.

Not long after the sponsorship, I was invited to become a member of the Young Professionals Advisory Council, where a select group of working young adults can devote time outside of hectic schedules to be a part of something truly wonderful for Make-A-Wish.  Joining YPAC has enriched my life, both professionally and personally and I am ever so grateful that I can support Make-A-Wish in the same manner that they did for my family so many years ago.

Thank you to the staff of Make-A-Wish Central New York and YPAC for everything you do!

A Wish is Everlasting

By Julia Benbenek, Wish sibling

Siblings tend to have a special bond that revolves around laughs and “shhhh” when mom and dad come around. Constant happy screams, laughter and running around was always guaranteed once you walked into our house. Until one day things changed in our household. The laughs suddenly were rarely heard and everything became still.

Cancer is not an easy topic for anyone to understand, especially for kids. I was 3 and my sister, Carlie, was 7 when our older brother, Andrew, was 9 and diagnosed with medulloblastoma. We didn’t know much besides the fact that mom, dad and Andrew were never home so Grandma and Grandpa practically moved in to take care of us. We never quite understood the seriousness of Andrew’s illness but we were always pleasantly surprised when others would bring us gifts or cards that students made at school for Andrew, but the best surprise was the one that we never expected.

IMG_8263Andrew was eligible for a wish from Make-A-Wish and my family immediately became on board with the opportunity and organization. At the time he loved Nintendo, Pokémon, and star wars and had several different games he truly enjoyed playing. So soon enough the wish for a fort in our backyard became Andrew’s wish. He chose the fort so it could serve as a little escape where he could play his games and hang out with friends and family.

The crew truly went above and beyond for Andrew’s fort. The inside included a TV, a PlayStation, a controller, games, a cooler, fun rocking chairs, and snacks that every young boy loved. The outside was also incredible since it contained a rock wall, swings, a ladder and stairs leading to a second level lookout. The fort became the hangout spot for all the kids in the neighborhood as well as all of Andrew’s other friends. Days and nights were spent in “Fort Benbenek” with laughs, thankfulness and relief that Andrew had beat cancer. It was everything a young boy could have dreamed of.

IMG_8265Well, 16 years later and the fort is still standing in our backyard with all the bells and whistles still attached. Andrew is doing well and has remained cancer free for those 16 years. He still loves the outdoors just as much as he did when he was younger and I honestly think that Make-A-Wish had a lot to do with it. The fort forced him to be outside after he had been in a hospital bed for weeks and months. It truly helped make up for lost time of his childhood in addition to playing an important role on our family.

Andrew’s illness wasn’t anything that anyone could have prepared us for. Some days we are caught thinking, why did this happen to us but on most we believe that everything happens for a reason and this happened to us because we were made to handle it and overcome it as a family. I am now 19 years old, a student at Ithaca College and a PR/communications intern at Make-A-Wish. Having the opportunity to be a part of this team has made me realize everything that I missed in Andrew’s wish process since I was so young. The power of a wish is truly inspiring, heartwarming and touching. Each wish is designed to fit each wish kid strictly to their likings and personality. My favorite part of the wish is the impact that it leaves on not only the wish kid but also their families, friends, the community and the Make-A-Wish crew. When I came in for an interview, they recognized my last name and remembered my brother and his wish. In those moments I realized how special this organization is and how incredibly lucky my family is.

Love,

Julia Benbenek

Remembering Mikey

By  Aimee McBride, Wish Mom

Five-year-old Mikey loved to play outside with his big brother Parker. He loved motorcycles, his dog “Bo,” and the color blue. After being diagnosed and treated for Wilm’s tumor, a rare kidney cancer, Mikey was given a wish. He wanted to go to Walt Disney World to meet and hug Mickey Mouse, and his wish came true in 2010. Though Mikey passed away from his illness, his family continues to celebrate his life and memory. One special way is through an annual gift and note to Make-A-Wish Central New York sent around the time of Mikey’s birthday. The McBride family’s desire is to continue Mikey’s legacy by supporting the joy-filled wishes of other children with life-threatening medical conditions. We think that’s a beautiful way to remember him and hope you do, too.

Below is this year’s letter from Mikey’s mom, Aimee, who has given us permission to share:

March 8…such a difficult day. They all are, honestly. But the birthdays, those are big…the reminder of what should have been, how old they should be, a reminder of just how much their physical presence is missed in our family.

Mikey & Parker at the airport prior to Mikeys wish tripOn these special days, trigger days I guess the grieving call them, not one passes that we don’t try to reach out and do something, even if it’s a small gesture, for someone in Mikey’s memory and in his honor.

I was looking at photos recently, looking for a particular one and came across some of our Disney trip, or I should really call it our “Give Kids the World trip,” as the boys hardly wanted to leave the village to go anyplace else. It was just so magical right there!

Two of my favorite photos are of our Mikey at the Village Pirate and Princess party. I can still remember this interaction between Mikey and the Prate like it was yesterday. Mikey was telling him a story and the laughter between the two of them was priceless. Mikey was so shy at first, but I remember his grin and laughter by the time the two of them were finished talking.

We are so grateful to have had that magical time as a family before Mikey died. It would not have been possible without Make-A-Wish and all the people, volunteers and companies behind this remarkable organization.

Mikey - in the ociean for the first timeIt’s true when they say a parent’s worst fear after their child dies is that he or she will be forgotten, so we try to do little things in this world that will keep Mikey’s memory alive and, equally as important, honor the legacy he left us:  To live fully and without fear, love unconditionally, and laugh hard – from the belly – at every opportunity you have. There was some good stuff packed into that little soul of his!

So we just wanted to say hello, let you know we will always hold you all so close in our hearts, and send this little something in Mikey’s memory.

With love and hugs,

The McBride Family – Aimee, Brian, Parker and Angel Mikey

Team Alex and Team Make-A-Wish

By Jim McLaughlin, Wish Dad

Editor’s note: Wish Kid Alex McLaughlin, 11, is running his first Boilermaker 5K via the Charity Bib Program. This will be Alex’s first time with Team Make-A-Wish; his dad, Jim, has run with the team since 2014.

My wife Bonnie and I both started running the Boilermaker about 15 years ago. We have missed a few years here and there, but have each done several 5K’s and 15K’s. If not for the Make-A-Wish Charity Bib, we would probably both be retired from running.

Our son Alex was diagnosed on August 24, 2011 with acute lymphoblastic leukemia (ALL). He completed treatment on his 10th birthday, October 24, 2014. Throughout his treatment we became aware of many different charities and fundraisers benefitting many sick children and their families. Make-A-Wish was obviously a major one that granted Alex’s wish to meet his favorite baseball team in 2012.

In 2013, we became aware of the Boilermaker Charity Bib Program, which helped support Make-A-Wish. We thought it would be a great way for us to help another kid who needed a wish.

Team Alex at 2015 post-race party - Ales is NOT in this

So, in 2014 I signed up for the Boilermaker through Charity Bib. We had many friends and family who vowed to support the effort and help us raise the money. One of Bonnie’s ideas was to sell “Team Alex” t-shirts that included the motto “No One Fights Alone.” Many of the people who were very supportive of Alex during his treatment, continued by supporting the team. Some as Boilermaker runners, some as spectators. As can be seen on Boilermaker Sunday, Alex did not have to fight alone. After having so much support in 2014 we did not have to think long about continuing in 2015. Again we had a lot of support from family and friends, many running the 5K or 15K, or cheering on the runners in their “Team Alex” shirts.

Alex McLaughlin - present dayIn 2016, they will be able to cheer for Alex himself, who has decided to run his first ever Boilermaker 5K race with the Make-A-Wish charity bib team. As many runners know, the support from the Boilermaker crowd is a huge boost during the race. Alex already knows what it’s like to have a lot of people cheering for him, and the sense of accomplishment for a major victory. We now look forward to seeing him experience it as a Boilermaker runner, and as a supporter of the next kid who needs a wish.

It’s our hope that Alex’s story will encourage someone else.

You can support Alex by visiting his Charity Bib page. If you would like to run with him and Team Make-A-Wish, there are only a few spots left. E-mail  dsmolen@makeawishcny.org  for more information.

Connor’s Hawaii Wish

By Connor David Stanton, Wish Kid

We left our house around 3:50 in the morning in a limo. We flew from the Syracuse airport to Newark, where we had breakfast. Then was the long flight from Newark to Honolulu, which was between 9 and 11 hours long.

Connor and family

The final flight was from Honolulu to Hilo. Once we got to Hilo, we still had an hour and 45 minute drive to get to our resort. By the time we got there, it was about 8. Our long-awaited trip had finally begun! We hadn’t eaten yet so we had dinner and went to bed.

Connor Stanton Hawaii Wish (3)

The next day was our tour of the island, but first we stopped to fuel up with some breakfast. It was a private tour: just me, my mom, my dad, my sister, and the tour guide. First we got to see some really nice beaches and a little bit of the island. After a lunch break, we got to go see volcanoes. There was an awesome crater called Devil’s Throat and a really cool plant called the ‘Touch Me Not’. When you touch it, it shrinks up. I even got to walk in a lava tube!

Connor Stanton Hawaii Wish (1)

The next day was the luau, but that wasn’t ‘til dinner time, so we went to the beach while we waited. The water was a very light blue. On the beach, I saw crabs, fish, and lots of lava rock. I also saw three sea slugs and a sea snail in some tide pools. Later on at the luau, there was a band, a pig roast, a fire juggler, and some dancing. The next day was our free day, which we spent hanging out on a really nice beach that had warm, light blue water. I saw fish and a sting ray in the water.

Day 4-(free time) Sunset

The next day was our snorkeling trip. We went out on a boat to a “good spot.” When we were snorkeling, we saw fish, coral, sea urchins, and lots of rock. After that we had lunch, then I went down the slide off the boat and jumped off. We saw dolphins and I even got to Day 4-Snorkelingdrive the boat by myself.  After the cruise, we walked around in the town we were in and had dinner; I had shrimp. We finished out the night back at the resort. We couldn’t wait to go zip lining in the morning!

The zip lining place was cool and there were nine lines to go on. I hung upside down. The waterfalls were really pretty, but it was very hot that day. On the trip, I tried a green orange and a ginger flower. They were really good! Day 4-Snorkeling Driving the boat

Sadly, we had to leave the next day. We hope to go again because of how fun it was. My favorite part was snorkeling at our resort and spending time on the boat. Thanks to Make-A-Wish for making it happen!

Colgate Wishmakers: Inspired by a Wish

by Matthew Miller, Colgate Wishmakers on Campus Club President

3-1My name is Matthew Miller and I am currently a senior at Colgate University.  I co-founded the Make-A-Wish Colgate club my sophomore year with a few of my very close friends.  First, I want to share a little bit about why I wanted to get involved with Make-A-Wish. 

I attended Summit High School in New Jersey for all four years of high school. One of my close family friends had a wish granted for her going into high school. Sarah and I had grown up together and, for about 10 years, lived on the same block. 

Sarah wished to be in a movie and Make-A-Wish flew her and her family out to California. On the day of her wish, she got picked up in a limo along with two other wish kids.  They were driven to the studio where they were filming one of the “Transformers” movies. The set location was secret and no one besides the people involved with the movie had access. When Sarah and the others got there, they discovered they each had their own individual trailer with their name on it. Inside was a standard trailer for actors but it was stocked with movies, apparel, food, and many other things.  After that, Sarah got her hair and makeup done for the movie. While that was being finished, she was given a giant “Transformers” poster signed by the entire cast.  Actor Adrian Greenier, famous from “Entourage,” randomly popped in to talk to Sarah. 

After hair and makeup, Sarah headed over to wardrobe where they picked out an outfit for her.  She and her family were greeted by one of the head producers who fimageWishollowed them around all day and ensured they received the proper treatment.  During the experience, Sara also met Michael Bay, the director, and Ramon Rodriguez, one of the main actors.  The setting of the wish kid scene was at the Princeton library with kids who were posing as college students. The scene involved a Transformer that had come storming through the library and Sarah had to freak out. 

Sarah’s wish was incredibly helpful in boosting her morale. This wish had a tremendous impact on her family as well.  I got to see firsthand how dramatically this changed Sarah’s mentality and view of life. This has helped her recover from her transplant and she is currently doing really well. 

The wish that Sarah received made me want to get involved and change the lives of other children with life-threatening illnesses.  I was shocked that Colgate did not have a Make-A-Wish club, so I proposed the idea to a few of my good friends. We started out by getting signatures around campus for those who wanted to be involved and writing a constitution of the bylaws.  Eventually, we presented in front of the Student Government Association and got our club approved. 

Over the last three years we have maintained a close connection with the Make-A-Wish Central 4 - ReducedNew York chapter. We have sponsored three Colgate Men’s Ice Hockey games and hosted a wish announcement  during our third game in late February. We have hosted wish families at each of these events, which has been the most rewarding experience of it all. These Make-A-Wish hockey nights have raised about $2,000 in total. Our other big event is our Walk for Wishes/5K run in the fall semester.  We have hosted two Walks in the past two years and have raised a tremendous $24,000.  Make-A-Wish Central New York has been incredibly helpful in the planning and preparation for these events.  Our club could not be happier to host wish families and to see the firsthand impact. 

I am looking forward to passing along the club to new leaders and continuing granting wishes.  I hope to maintain a close relationship with Make-A-Wish after graduation in May.