Emiliafest 2024

DATE

Saturday, May 11th
Rain or Shine!

TIME

12:00 pm - 9:00 pm

LOCATION

The Home of Bryan and Susie Friedel

309 S. Hughes Street in Downtown Apex

Parking on South Elm St. by the railroad tracks; overflow parking in church lot at the corner of Moore St. and S. Elm St.

DETAILS

Live music starting at 1:00 pm
Kids Welcome!
BYOC- Bring Your Own Chair
Free Beer!
Cash T-shirt Sales
Online Donations - ALL PROCEEDS GO TO CANNONBALL KIDS CANCER FOUNDATION

We are hosting this event to raise awareness about and money for childhood cancer. We have had two families dear to us who have had to deal with this awful reality and needed, for our own sake, to find a way to make a difference. In 2015, with only two weeks notice, we raised over $1,000 by people stuffing $5 bills into a mason jar. The following year, we partnered directly with Cannonball Kids cancer Foundation, a grassroots organization who focuses on research for new medications so that kids don't have to endure horrific pain or develop secondary cancers from their treatment. We put more effort and planning and raised over $13,000! We had to take a year off because we moved out of our house for a major remodel and renovation, but made a whopping $23,000 our last Emiliafest in 2019!!! After taking a few years off due to Covid we came back stronger than ever, raising over $27,000 in 2023.

By partnering directly with CKc, you can contribute before the party, or during the party by simply pulling out your phone and donating securely online. We are accepting cash for T shirts, so bring some fun money, too!

Kids welcome, but please keep an eye on them and know that we are just a family, trying to do a good thing and have some fun. There are the usual backyard hazards- we want a great time to be had by all, but please no lawsuits!

Click here to return to the Emiliafest website

THANK YOU TO OUR SPONSORS!

Please click here to see our sponsors!

Emilia's Story

by Susie Friedel, co-founder of Emiliafest

It all began with a trip to the urgent care center in Camp Hill, Pennsylvania when almost 10 year old Emilia Rose Dameshek complained to her parents about her leg hurting. Her mother, Natalie, one of my dearest friends, assumed it would be growing pains or maybe a pulled muscle. At the urgent care, they did x-rays and then told Natalie they needed to follow up with their pediatrician the next day and that it would take weeks to figure it out, but it looked like bone cancer. Ten days and many tests later, the diagnosis came in. Ewing's Sarcoma. The urgent care center, devastatingly, had been correct.

Emilia was admitted to the Children's Hospital of Philadelphia where they learned the cancer has spread to her lungs and she had a 28% chance of surviving 5 years. She began a total of 14 rounds of chemotherapy using five different drugs and after the first six rounds of chemo the next step was a drastic surgery to remove the tumor and hope that it had responded to the chemo. They took out the top of the femur including the hip joint, and a third of her pelvis. She had to spend the next 4 months in bed or a recumbent wheelchair, not able to sit past a 45 degree angle while undergoing her next 8 rounds of chemo to destroy any cells that remained in her system. The girl that loved to dance and cartwheel now had to learn to walk again. Emilia showed so much strength, courage, humor, and grace through it all that she touched all who knew her and many who had only heard about her. She kicked cancer's butt and showed us all how to be better people along the way.

At almost exactly one year cancer free, the Damesheks got the devastating news that her labs were off. It turned out to be a therapy related blood cancer that had surfaced in Emilia this time. How could it be?, I asked. What were the chances? The shocking answer is that it is surprisingly common for kids who beat one kind of cancer to develop secondary cancers. The drugs that were their only option are brutal and antiquated. Kids with cancer today are treated with the same drugs their grandparents would have been treated with. As Emilia's mom told me, when you are signing all these forms that warn you of the possible side effects, you can't even entertain them, because your child has bone cancer. This is the truth: the best and brightest doctors in the world cannot change the fact that their best treatment options for pediatric cancer suck.

Now, her only option was a bone marrow transplant. None of her family matched, but thanks to the amazing efforts of BeTheMatch.org, they found one woman out of the 25 million registered in the database who was a match for her. Emilia was admitted to the hospital for 37 days while they essentially shut down her immune system to prepare her for the bone marrow transplant. They watched and waited during weeks of isolation and extreme care and finally her numbers started to show that the match had worked. She was getting better! This little girl has just beaten cancer twice in two years and again showed us all so much about perseverance, positivity, and courage.

The following winter, Emilia was getting strong enough to finally go back to school and be with her friends when they got the unbelievable news that she had full blown AML Leukemia, only 7 and a half months after her transplant. As I read the news, my brain was screaming obscenities - until I read Emilia's reaction. "Third time's a charm!" Here, a 12-year old girl who is going to have to battle cancer for a third time in less than three years, just showed me up with her positive attitude.

Once again, Emilia needed more chemo and the bone marrow donor gave more cells for Emilia. Though that combination killed the leukemia, enduring such harsh chemotherapy drugs for the third time was too much for her body to take. She developed graft versus host disease and suffered as her mouth, throat, eyes, and intestines because raw and blistered. Her liver began to shut down, her kidneys were damaged and required dialysis and she needed daily transfusions of blood and platelets. She was cancer free, but dying from the side effects of the drugs used to cure her. Despite her amazing team of doctors and nurses that loved her like their own, they just couldn't save her this time. Her parents, Mitchell and Natalie, and her brother (and partner-in-crime), Max, had to prepare to say goodbye. We lost Emilia on May 19, 2016.

Emilia was one of the most beautiful children that I have ever known - inside and out. She was one of those kids who was so full of light that she jumped out at you in photographs. She became a pillar of strength for my own family - when my kids struggled with something, or if my husband or I were feeling overwhelmed by life, we would talk about her. "Think about what Emilia has gone through. What would Emilia do?" Her father, Mitch, had a friend named Mike Newman, who put it best: "Some will grace our planet for many decades and leave hardly a fingerprint. That's okay. Others of us, maybe the majority, will grace this planet for a fair time and leave a meaningful footprint as parents and siblings and employees and friends. And then there are the rarified few that, through brute force of their spirit, will move mountains and improve the shape of our planet. My closest friend in elementary school is the father of one such individual. His daughter's energy, her effect on people, is other - worldly. And perhaps, for that reason, we may not be allowed to keep her in our world for as long as we would like. I am praying for my friend and his family. To his daughter, Emilia - as an observer of your spirit, your smile, and your ability to move mountains and shape a planet, I am certain that if you leave us, you are leaving us for a place that has earned your presence. And if that happens, I pray that you see how you've inspired thousands and left and awesome, lasting imprint on us and our planet.

Emilia has truly changed the shape of the planet. Her light has ignited a fire that will bring change to the horror of pediatric cancer. Her physical presence is missed terribly by her family and countless friends, but her grit, her strength, and her never-ending positive attitude will live on in all who hear her story. She was brighter than the sun, and just too beautiful for this world.

My hero, Emilia, and me, at Bethany Beach, Delaware - where I met her mom many years ago.

About Cannonball Kids' cancer Foundation (CKc):

CKc is a solution-oriented foundation working to fund innovative, accessible research for children fighting cancer to provide better treatments and quality of life, and educate for change. Your support means more good days and less toxic treatments for kids fighting cancer.

Thank you for helping CKc fund innovative research and give hope to families!

Hope • Commitment • Connection • Innovation • Gratitude

You can learn more at cannonballkidscancer.org.

Are you inspired to help kids fighting cancer?

No effort is too small to make a difference. You'll find more resources and ideas at https://cannonballkidscancer.org/other-ways-to-activate.

It's easy to start your own fundraising page! Just fill out this short form, and we will email you the link for your page: https://cannonballkidscancer.org/start-a-fundraiser.

Have questions? Please contact meghan.hedrick@cannonballkidscancer.org.

CANNONBALL KIDS' CANCER FOUNDATION IS A 501(c)(3) NON-PROFIT COMMUNITY SERVICE ORGANIZATION. CANNONBALL KIDS' CANCER FOUNDATION'S REGISTRATION NUMBER IS CH41586. A COPY OF THE OFFICIAL REGISTRATION AND FINANCIAL INFORMATION MAY BE OBTAINED FROM THE DIVISION OF CONSUMER SERVICES BY CALLING TOLL-FREE, 1-800-435-7352 WITHIN THE STATE OF FLORIDA OR BY VISITING www.800helpfla.com. REGISTRATION DOES NOT IMPLY ENDORSEMENT, APPROVAL, OR RECOMMENDATION BY THE STATE.

Emiliafest

Saturday, May 11, 2024