Kyla’s Story

By Brian Heffron, Wish Dad

photo 2.jpgIn May 2014, while giving my daughter a bath, my wife and I noticed something odd. In addition to looking very pale, she had tiny red dots and bruises on her body. We decided to have our pediatrician check it out, but were not worried.

Twenty four hours later, Kyla was rushed to the emergency room. She was running out of blood. And what was more frightening is that the doctors were not sure why.

After weeks of transfusions and countless tests, Kyla was diagnosed with Severe Aplastic Anemia, an extremely rare disease that nearly ceases her body’s production of blood cells and causes her body’s immune system to fail to fight against even the weakest of germs. After spending the majority of half a year inpatient at our local children’s hospital, doctors informed us the treatment was not working. The only option for Kyla’s survival was a bone marrow transplant at Boston Children’s Hospital.

Photo 4 .jpgIt was in Boston on a very cold night that I was walking back to our apartment from the hospital when I broke down. Kyla was so tired of living an isolated life, so over being sick, so done with restrictions that kept her away from playing with others. She was constantly being reminded of her illness, both from her own body and her surroundings.  She needed something bright to hold on too. Something to fight for. She needed a wish. The next morning I called our hometown Make-A-Wish and asked for help. Their amazing staff immediately got to work.

Kyla first expressed to us that her wish was to meet her favorite doctor. My wife and I were shocked. How could a three-year-old be so humble? When her wish granter pressed further about who this doctor was, she proudly told us that it was Doctor McStuffins from the Disney Junior television series, “Doc McStuffins.”

For Kyla, meeting Doc was so much more than just meeting a “celebrity.” Doc represented so much to her. She normalized what was a very grownup and confusing world that Kyla was experiencing. I remember her telling me she wanted to meet Doc in order to show her how brave of a fighter she was, how she was just as brave as those toys Doc “fixed” in every episode. In March 2016, Make-A-Wish provided Kyla an opportunity for that to happen, a visit to meet Doc McStuffins at Walt Disney World.

Kyla was so proud to show Doc she was on the road to recovery.  This is the moment that I knew my daughter was going to be okay. You can see it in her face, can’t you?  

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Make-A-Wish grants wishes to children facing life-threatening illnesses, regardless of who they are or where they come from. But if you think about it, they grant wishes for all of us, right?  We all wish for comfort to those who are struggling. We all wish energy and encouragement to those who need it.

As a volunteer with Make-A-Wish Central New York, I see the experiences of other hopeful children. I not only give what I have, but I also share Kyla’s journey and volunteer my efforts to raise awareness of this great organization and the impact it has on a child.

The Make-A-Wish experience, will stay forever. When she steps on stage at her first recital, it will be there. When pulling away in your car from dropping her off at college, it will be there. When you are walking her down the aisle, it will be there. The power of a wish lasts forever.

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You have Kyla’s permission and mine to share her story in your communities, your businesses, your homes, and organizations. Remember, there are still so many children who are battling life-threatening illnesses, who close their eyes and wish.

All I ask is that you pledge to be the one who grants those wishes. Be a wish granter. All of you…all of us.  Please, encourage someone who has not donated to Make-A-Wish to join us in our efforts to make all wishes come true for children in our community.

From Kyla’s heart and the countless hearts of all wish kids, I say thank you, thank you, thank you.

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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!

How Lucky We Are

By Coleen Carman, Wish Mom

March is a special month in our home as it not only includes the much celebrated St. Patrick’s Day, but it is also the month that includes our wedding anniversary and, more importantly, Patrick’s birthday on the 24th! Needless to say, it is a month full of celebrating in our family. As part of our celebrating, we want to share our joys and appreciation for all that Make-A-Wish Central New York has given our family…

IMG_7456The gift of a wish granted to a child who endures a life threatening illness is not only a dream come true for that child, but is also a gift of cherished memories given to that child’s entire family. Such is the case for our family as a result of Patrick’s 2006 wish trip to Walt Disney World. The joy experienced by Patrick, his brother Brennan, my husband Kevin and myself was immeasurable. The memories made on that trip have been a source of resilience and hope during the countless medical challenges that ensued upon our return. To this day, Patrick (now almost 22) and Brennan (a high school senior who is soon to be headed off to college) frequently share those memories, which remain as vivid as if this trip was just taken yesterday. As Patrick’s parents, we have witnessed the incredible bond strengthen between our sons as a result of this wish granting experience. Our family has experienced first hand the transformative power of our son receiving a wish from Make-A-Wish Central New York. Throughout every hospitalization, every medical procedure, every day where the answers to complicated medical decisions are unclear; there has been that constant backdrop of precious memories of a wish being granted to a young boy with big dreams.

When moments of discomfort and uncertainty become overwhelming for Patrick, our solution is to take a memory walk back to the sights, sounds and happy feelings that a wish experience brings. Quite simply, the gift of a wish granted provides one with an everlasting light of hope to guide them through their darkest times. A wish granted is not just a brief moment in a child or his family’s life. It becomes a part of that family’s tapestry. Music has always been a driving force in Patrick’s life. From his early days in the NICU through the present day, the soothing comfort that music provides has been undeniable.

IMG_0001So a few years back when Patrick decided to embark on his second CD, his heart turned to Make-A-Wish Central New York. What a tremendous pairing this became! Patrick’s two passions colliding; his insatiable love of singing and his joy of reconnecting with our Make-A-Wish Central New York family. This proved to be quite an endeavor, as in the middle of producing this CD, Patrick became gravely ill. We put the CD project on hold for several months as we cared for Patrick both in the hospital and at home. What helped pull Patrick through this particularly devastating chapter in his life was the desire to get his CD completed so that Make-Wish Central New York would have more funds to help support a child’s wish. To have someone experience the magnitude of joy that he felt from his own wish was the inspiration he needed to get through. In 2013, Patrick was able to achieve his goal while sharing not only his gift of music but also the joyful memories of his wish with all of the people throughout CNY who purchased his CD.


IMG_0498Giving back to an agency who gives so much seemed so natural to our family when our son Brennan began contemplating his Eagle Scout Service Project in 2014. His memory of the wish granted to his brother led him to approach Make-A-Wish Central New York. His dream of fulfilling a wish for the people who gave our family so much joy was his anchor. We are thankful to the staff at Make-A-Wish Central New York who embraced Brennan’s vision of creating a wish pond. As his vision of the pond came to fruition, so came a resurgent flood of joyful memories from Patrick’s wish trip. The spirited momentum of support and enthusiasm from the Make-A-Wish Central New York staff, friends and the community members all across CNY was remarkable. The infectious spark that Brennan ignited to create a relaxing place for reflection at the Make-A-Wish Central New York headquarters was a labor of love. His vision was not only fueled by what he had directly experienced years back, but also by the comfort that this wish pond would give to past,present and future wish families. It is now a place to hear the calm of the waterfall while seeing its beauty, a place to experience the love and gratitude that a wish granted to a family member ignites in one’s heart.

Yes, March is a fun-filled month for our family. But knowing how lucky we are to have a dedicated team of staff members and volunteers at Make-A-Wish Central New York is not something that we simply think about in this month exclusively. In truth, our appreciation for all that Make-A-Wish Central New York is and all that it has done is a constant thread in our family’s tapestry, and it makes us a very lucky family!🍀

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A Dream Is A Wish Your Heart Makes

By Adrianna Quig, Wish Kid

Being a 17-year-old teenager growing up with heart conditions wasn’t easy. Undergoing two open heart surgeries as a baby and a third one in July 2015, I have had a much different childhood than most kids. Endless doctor visits, countless procedures and “pokes” unfortunately become normal to me and other children growing up with medical conditions.

Photo 0214Last spring I was told I was eligible for Make-A-Wish due to my rare heart condition, which I was about to get fixed. That news distracted me from my nerves and fears in the months leading up to my surgery. My wish granters made my wish-granting experience one I will never forget. The organization made me feel more at ease and gave me and my family something to look forward to during the long days in the hospital. I wished to go to Hawaii with my family and stay at the Aulani Disney Resort! The thought of going to paradise kept my mind off the other things going on.

Almost four months after my surgery, I went to Hawaii and had the time of my life. Having spent most of my summer cooped up, I felt like Hawaii was better than any summer vacation I could have had. It was relaxing and I was able to spend time with my parents and little brother after a long stressful few months.

What Make-A-Wish did for me is something I can never forget. I recently created a fundraising page and set a goal to raise awareness and funds for this life-changing organization to be able to grant more children’s wishes. This is also part of a school community service project to give back. I picked this organization because it is very close to my heart and I would love to give back for what they did for me. There are many more children in my area who deserve a wish to let them make unforgettable memories through a tough time. Make-A-Wish doesn’t just change the lives of the children, but also the wish families involved. They go above and beyond to make a child’s wish something spectacular. The possibilities of a wish are endless!

Please help me raise awareness and funds by contributing any amount you can – $10, $30, $50, $100 or even more. Every dollar you donate can help Make-A-Wish kids renew their courage and find a turning point in their lives.

Thank you for your support!