The Beauty of Illness

By: Melissa Heffron, Wish Mom

At the very moment your child receives a life-threatening diagnosis, life, as you know it, ceases to exist. As you slowly start to digest the conversation that you had with the doctor, you gradually find yourself falling into an unimaginably scary, deep, and never ending abyss. You start questioning everything – science, yourself, the environment, God. You wonder how you’re going to put one foot in front of the other, let alone care for the rest of your family. In your deepest despair, you silently debate whether or not anyone would care if you stayed in your room and never emerged.

Prior to my dMelissa & Kyla - minnie dressaughter’s illness, I was never one to divulge any personal information or ask others for help. My family was my business, and I never thought it was anyone else’s responsibility to assume. However, I quickly learned that the brutal task of undertaking a horrible illness was not one I could tackle alone. As much as I couldn’t physically handle it on my own, emotionally, I was also far too under-prepared to independently manage it. As a mother, I was handed the impossible job of holding my daughter’s hand through every painful, unimaginable, scary, and uncertain procedure. I was expected to hold my emotions in check as she screamed in pain, cried from isolation, or vomited from another sickness. On her own, Superwoman would have failed at this task, so I certainly did not have a chance in succeeding alone.

Kyla & bro

Kyla’s illness required that every ounce of my energy be focused on keeping her alive. I have two other children, one being an infant at the time, so I obviously had other obligations, but for the most part, my life revolved around keeping Kyla safe. I became a robot with the glaring discrepancy being that I quickly became both physically and emotionally exhausted.

Luckily, beauty emerged into our lives just as we were nearing rock bottom. Family, friends, and acquaintances offered to help us after hearing our story. People took it upon themselves to organize dinners, send care packages to the hospitals we were at, donate money, register as bone marrow donors, and even donate blood. I was fortunate enough to meet other mothers in similar positions as myself, and we provided each other the much needed understanding and an outlet to vent our frustrations to. Nurses and other staff showed Kyla so much love and affection that I often forgot we were in the confines of our hospital room.

We also saw beautKyla Heffron Wish (35)y personified when we took our Make-A-Wish trip to Walt Disney World. For once, we forgot about an illness and instead lost ourselves in the most magical place on earth. For one glorious week we dreamed big, enjoyed every last attraction, stuffed ourselves silly, and most importantly, celebrated the whole family’s triumph over the worst stage in our lives.

However, the most beautiful event to occur from Kyla’s illness is one she actually holds with her today. A selfless, German man agreed to donate bone marrow to a child he had no connection with. This beautiful gift afforded my daughter a second chance at life, and equally as important, provided my family a chance to remain intact. All of these beautiful things played a vital role in Kyla’s treatment and her long recovery.

One of the most important lessons I learned and will take from our journey is that illness truly does cultivate beauty. Humankind has a natural way of embracing the sick and vulnerable. We were lifted onto the shoulders of countless individuals, which allowed us the chance to not only survive, but thrive.

Kyla Heffron Wish (37)

Wishing It Forward

by Olivia Faith Lounsbury, Wish Kid

You know when you’re a little kid, and you always dreamed of being a ballerina, or a firefighter, or a teacher, or a princess?

Each and every child is deserving of this outlook, for at least the nascent stages of their lives. The world through those innocent, rose-colored glasses is something we all look back on fondly, reminiscing of a simpler time.

What happens when this shining outlook is stolen from a four-year-old, seized without any hope of recapture? What happens when this child begins to lose the hope that makes them just that: a child. Once those stylish rose-colored glasses come off, is there any way to put them back on?second

Acute myeloid leukemia (AML) stole my life for one year and two months, and fortified every minute thereafter. I was brought to the hospital on my fourth birthday. While all of the other children were enjoying cake, concerned only with the thought of not having a second serving, I was laying in my mother’s bed, listening to the din of what was supposed to be my birthday party. I couldn’t sleep but I felt like I needed to rest for five years. Something was wrong.

I was diagnosed with AML. Daily life no longer consisted of finger painting, but finger pricks. No more ‘washing my hands before dinner’ but removing me completely from the outside world because of the chance of infection. My mother, the most beautiful, thoughtful person I have ever met, was my guardian angel.First

But even with this motherly love, the hope was slowly beginning to deteriorate along with my physical condition. Surrounded constantly by anesthesiologists in crisp white coats and surgeons in sterile uniforms, was it even possible to not mature rapidly? My middle name no longer had meaning, it was just a mixture of letters.

I’m sure the majority, if not all, individuals reading this can agree that mothers are God’s gift to the earth. My mother contacted the Make-A-Wish Foundation and organized a meeting. Being the spontaneous child I was, I wished for a water trampoline (yeah, a Fourthwater trampoline). Every day after the conclusion of the initial meeting, I woke up each and every day excited, rejuvenated and overjoyed because I had something to look forward to. I knew if I continued with my treatments and took my medication, I would be on that trampoline in no time. The sense of excitement overcame the sense of doom and hopelessness. I now had something that would make me feel ‘normal.’

I remember this feeling each and every day, even as the 17-year-old I am today. Now, my wishes are a little more complicated and not always guaranteed. For example, now I wish to become an anesthesiologist. At this pivotal point in my life, graduating and committing to a university, the same feelings of hope and excitement overwhelm me every day. Going into my senior year in high school, I wanted the whole world to experience this at every moment. Of course, I am only one person but I wanted to start somewhere.

Sixth

The summer before my senior year, I reached out to the Central New York Make-A-Wish chapter and was greeted immediately with enthusiasm, support, and suggestions. With a crew like this helping me each and every step of the way, we were able to construct a plan for the upcoming school year, including events, raffles and other fundraisers that would hopefully contribute to the Make-A-Wish Foundation.

 

Later in the summer, one of my co-workers at a local bakery, Union Springs senior Anna Hand, suggested our schools work together to achieve this goal. We worked together all summer to be on the same page. The first day of school finally arrived, and she and I were as prepared as we could ever be. We walked into our respective schools and presented the idea to our National Honor Societies. The support from the members of National Honor Society, the students and teachers, and every member of the community, demonstrates the power of cooperation and the magic of hope. Together, our schools – Union Springs and Southern Cayuga – combined our Livi Lounsbury senior photofunds and were able to support the wishes of children with life-threatening medical conditions. The excitement described earlier was matched, if not exceeded, by the excitement I had had throughout this endeavor.

As mentioned before, I will become an anesthesiologist. I have had the experience that will allow me to not only do well as a pupil, but become engaged in the hearts and minds of my patients. My work with the Make-A-Wish Foundation has proven how strong it can be when you empathize with someone and give it all you have to inspire something as wonderful as a child’s smile.

Thank you for my water trampoline. Thank you for my opportunity to help you. Thank you for showing me what qualities separate a great doctor from a good doctor, and thank you especially for the love you spread to the children of today.

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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My Hawaii Wish, My Happy Place

By Breonna Popluhar, Wish Kid

hawaii

In November, I was told that Make-A-Wish®     Central New York had granted my wish to go to Maui, Hawaii on my birthday. I was beyond excited. As far as vacations go, my family and I had never really been anywhere tropical, so I knew this would be a good experience.

We arrived in Maui on November 11, the day before my birthday. As soon as we got off the plane, I knew it would be great. We were immediately greeted by a Make-A-Wish® Hawaii volunteer, who kindly gave us beautiful flowery leis and tips about things to do on the island and how to get around. The hotel we stayed at was beautiful. Every morning there was a penguin feeding in the main lobby, which was wicked cool. The pool area was huge and there was a path behind it that led to different places around the island.

The ocean was absolutely amazing and we went snorkeling one of the days. On that day we went out on a boat with a few other families, ate some hot dogs and hamburgers, put on our flippers and snorkels and went out into the ocean. It was so cool and I’m so happy that this was one ofullsizerenderf the activities I was able to do. We also took a bus tour up to some of the highest points in Hawaii. We got up to an elevation of 2,000 feet! We also got to see some other areas of Hawaii, which was cool. These areas were mostly farm land with smaller houses. I remembered thinking that anywhere you live in Hawaii, it must be great. We also got to stop at a beach where there were about ten huge sea turtles just lying on the sand! We couldn’t get too close to them, but just seeing them was an experience of its own.

One of my favorite things that we did there was go jet skiing. I normally riimg_2993de four-wheelers and snowmobiles, so riding a jet ski was easy. I liked it so much that my stepdad and I decided to go jet skiing a second time! All of the restaurants that we ate at were in the next town over and those were super good with lots of seafood and healthy choices.

Honestly, this was a life-changing experience for me. I truly think being in Hawaii was the happiest I’ve ever been and you can’t help but feel relaxed and happy in the environment. I’m now even considering studying nursing at college in Hawaii. I figure if Hawaii is where I’m most happy, why not spend my whole life there? I can’t thank Make-A-Wish enough for img_2803giving me the opportunity to find my happiness.

If anyone asked me what they should wish for, I’d say think of somewhere you’d be happiest and go there. Because what more can you wish for other than to be happy?

 

Why Your Donation Matters on Giving Tuesday and Beyond

Black Friday. Cyber Monday. Giving Tuesday.

You’ve heard the chatter about this special day, the day of philanthropy celebrated the Tuesday after Thanksgiving. But did you know, since being initiated in 2012, Giving Tuesday has grown into a global movement of fundraising for nonprofits?

It has inspired everything from collection drives for food, blood anwish-familyd clothing banks, to monetary donations and random acts of kindness. Last year alone, Giving Tuesday inspired $117 million in donations, which was raised for charities in more than 70 countries.

With so many worthy organizations deserving of your support, we ask you on this Giving Tuesday to keep Make-A-Wish in your charitable giving thoughts and actions.

beautiful-lola-reversedHere’s why:  For Make-A-Wish Central New York, the average cost of a wish is nearing $12,000. At any given time, our chapter is working on approximately 80 wishes with no waiting list. Through your generous support, we  create magic for children with life-threatening medical conditions during a time they need it most.

Wishes inspire hope, strength and joy during the daunting challenge of medical treatment. They give a child the opportunity to dream, and we work to make those dreams come true.

Your donations on Giving Tuesday – and any time during the year – bethank-youcome wishes fulfilled; unique experiences that provide a lifetime of happy memories and change lives for the better.

Be a part of the magic. Join us in making wishes come true.

May the giving today go viral, and may it last all year long!

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!