For a week she was just a child, not a child with cancer

by Katie Green, Wish Mom

Swimming with mermaidsFlying like Tinker Bell in a plane, dining with Disney Princesses, meeting a star fairy, having unlimited carousel rides, being tucked into bed by bunnies, being chosen for a magical wand, and swimming with real-life mermaids…these are only a handful of the amazing moments we had on Alayah’s wish trip.

Even now, a month later, we are still trying to convince ourselves it was all real. What Make-A-Wish did for us, and in granting all other wishes, is magical.Riding the carousel

The last 10 months have been the hardest I have ever had to face. As a mother, I have been helpless beyond hope and prayer in my baby’s fight for life. She has fought hard and is winning, but the price has been her childhood. She will win this battle, but she will never return to a carefree child.

Make-A-Wish did the impossible and gave Alayah back a piece of her childhood. For a week, she had no pokes, and she had no fear. There was a life in her, a spark that had been missing. She was able to see magic and wonderment with an innocence of childhood she has not had in many months. For one week, she was just a child, not a child with cancer.

I can never thank you enough for all that you Alayah & Elsahave done. There are no words that could ever describe the depths of our gratitude. The smiles from that week are forever in my memory and tucked away in my heart. This trip was so much more than a simple vacation. I can only describe it as magic.

Thank you, thank you, thank you, again and again. You made Alayah’s wishes come true and healed our hearts.

Love,

Katie, Mark & Alayah

 

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.

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.

Still Living the Dream

By Josh Dibble, Actor and adult Wish Kid

Editor’s note: The comments below were shared by Actor and Wish Kid Josh Dibble, who received his wish to attend the International Modeling and Talent Association Conference in Los Angeles in 2008. After his wish, Josh moved to New York City and found success as a model. Since then, he has been featured on “America’s Next Top Model,” where he made it to the semi-finals, and has acted in several independent films. Originally from Clayton, NY, Josh currently resides in Los Angeles, where he is working and studying acting.  Josh shared these comments at the 2015 Sugarmman Law Firm Wish Ball, for which he was the featured speaker.


Josh 2I’m Josh Dibble – I’m a wish kid and I’m living with Wilson’s disease. When I was 12, only a couple of days into the start of 7th grade, fellow students and teachers started noticing that I was becoming a little jaundice.  When I went home we couldn’t tell because our lights had a yellow hue to them. In the next couple of days it got worse and even with the lighting in our home – we were able to notice the discoloration of my skin. My mom being a phlebotomist got scripts to do blood work and my results came back off the charts.

My disease does not let my body process copper.  People only think of that as being a metal but it’s actually in a lot of things just as zinc and magnesium are. Normal levels are 0-45 with 45 being high.  Mine were 2,500.

I spent the next couple of months in the hospital with every test In the book being performed on me. They had no idea what was happening. They have done two episodes of the show “Dr. House” on my disease and for anyone who knows the show it’s always the most extreme cases. I lived that. It took them a year to finally diagnose me and say that it is in fact Wilson’s disease.  It was very hard because my disease presents in so many different ways and my mom was actually the one who diagnosed me.  She did so much research and said that’s what it was but the medical professionals didn’t want to take that from her. yet everyone knows – you should always listen to a mom!

Josh 3Growing up, I always wanted to be an actor. I was what some would call an eccentric kid and loved making things come to life especially playing with my toys and perfecting sound effects. What a lot of people don’t know is acting is a business. Starting in any business is not easy or cheap. We could just never manage to get into it.

We were told about Make-A-Wish through one of my mom’s co-workers, so we picked up the phone and made a referral.  Shortly after completing all of the steps, we found out that I was to be granted a wish.  When the wish granters came to my house they asked for three wishes in case one of the other two could not be done.

My number two and three wishes were to go somewhere tropical because who wouldn’t.  But my first wish was to attend IMTA (International Model and Talent Association), which happens twice a year – once in New York City and again in Los Angeles. LA is the one I wanted to attend.  They said most kids want to go to Disney and that this was one of the most unique wishes they had received.

Most people have six months training going into the competition; I had none.  I was a very, very shy kid, like abnormally shy, so I just did modeling as a door opener and I didn’t have to talk.  That special wish and that competition was over eight years ago. Today, I’m still following my dream as an actor now living in LA.  None of this would have been possible without Make-A-Wish.

Wish Kid Josh Dibble featured speaker for Wish Ball 2015

I owe a lot of where I am today to this organization and because of all of you who believe in and support the mission. You and they have made one of my dreams into a reality – not just something that lasted for a week. As cliche as it may be, I truly live life by the motto “everything happens for a reason.” Good or bad you choose how to deal with it whether it consumes you or you use it to grow.

Josh 1There’s actually a reason why I’m not wearing a tie tonight. My grandfather said, “I will go [to Wish Ball] but I’m only wearing a jacket, I’m not wearing a tie. So if they don’t let me in, you’re going to have to come outside and give your speech to me after you give it to them.” I said, “Grandpa, if they don’t let you in then they can’t let me in either, because I’m not wearing a tie so that may not work out.” The day before I arrived home, my grandfather passed away. Now my grandfather is standing next to me, not wearing a tie.

In a lot of ways, Make-A-Wish reminded me of my grandfather. If he was here tonight, every single person in this room would know who he is; he could talk to anybody and everybody. Whether he talked to you for an hour or five minutes, you would know exactly who he is. He had a way of thinking outside the box and getting things done. He always referred to himself as the outsider. Make-A-Wish has a way of getting things done, when you don’t think that they can do it.

My disease has changed my life, and I am where I am today because of it, and I wouldn’t change it for the world. You choose what you do because of something, you can either let it consume you, or you can grow from it. One of my goals is to eventually be able to go full circle and grant a wish for a kid someday, because I know what you need sometimes when you’re struggling.

Thank you all for being here tonight and for supporting a foundation that I know first hand changes lives and makes wishes come true.