Don’t give up, I won’t give up
Don’t give up, no no no
I’m free to be the greatest, I’m alive
I’m free to be the greatest here tonight, the greatest
The greatest, the greatest alive
— Sia, from “The Greatest”
The words “don’t give up” ring true every day in Ellie Scalzo’s life. Balance is key for any 11-year-old striving to be the best in academics and athletics, but especially when dealing with Type 1 diabetes.
Every carbohydrate must be accounted for, as blood sugar level is so important for Ellie, who lives in Newport Beach. Her positive spirit and drive help her confront the many challenges that come her way. Those familiar with Ellie know that she is a special girl. Hall of Fame swimmer Aaron Peirsol describes his young friend as precocious and ebullient.
However that does not mean Ellie can fight this fight alone. She gains support from neighbors like Peirsol and the community, and everyday help from her family, including her mother, Eva.
It’s a big weekend next week for the Scalzos, and Eva, in particular.
Eva, a former U.S. national team swimmer who more recently competes in ocean-water swim races, is taking to land for the 13th annual OC Marathon on May 7, where she will run the half-marathon as part of the National Stem Cell Foundation team to raise money for stem-cell research. She is using Crowdrise to raise money.
Eva, her husband, Nick, and Ellie’s sister, Ruby, have become more familiar with Type 1 diabetes and want to do all they can to help. But Ellie’s rise has been inspirational. She has become an ambassador for the Juvenile Diabetes Research Foundation.
There seems to be so much light now, when 2½ years ago there had been darkness.
‘It was like living with The Exorcist’
The transformation of Ellie Scalzo came quickly and unexpected. A whole lifestyle change took place one day after her 9th birthday.
Eva was told that her oldest daughter wasn’t feeling well and was experiencing severe lethargy. After a visit to her pediatrician it was discovered she needed emergency aid as her blood sugar level was at 550, more than five times the normal level.
Eva packed a bag and rushed her to Children’s Hospital of Orange County, where Ellie was given insulin and put through a barrage of tests.
Ellie was diagnosed with Type 1 diabetes and her life would never be the same.
“When you have a child who gets diagnosed with a lifelong disease they go through the seven stages of grief,” Eva Scalzo said. “It’s like losing a part of yourself that you will never have back. The first month was like living with ‘The Exorcist.’ It was that gnarly, kicking, hitting and screaming. It was very difficult.”
Ellie needed time to adjust and accept the disease. The first six months involved daily injections, Eva said.
Eva cried many tears seeing Ellie’s life change.
But during the transformation Eva was advised to maintain Ellie’s usual activities, and that included swimming.
The Ultimate Mentors
Peirsol had been a friend of the Scalzos before Ellie’s diagnosis. The famed swimmer, known as the Backstroke King, remembers when he moved into the neighborhood on the peninsula four years ago, the Scalzo sisters brought him cookies to welcome him.
When Ellie was in the hospital, Peirsol visited his friend. And when she wanted to focus more on swimming, he was there too.
“He got her in the pool and held her in the pool,” Eva said of Peirsol and Ellie. “He told her, ‘This is your home. This is what is going to get you through this.’ ”
Peirsol also called his friend and fellow Hall of Famer Gary Hall Jr., who is a Type 1 diabetic and enjoys making himself accessible to others who deal with the disease. His work can be overwhelming as he said thousands of people have wanted to speak with him to gain hope while confronting all the challenges that come with Type 1 diabetes.
Hall, 42, who won 10 Olympic medals, put his phone number on his website to take calls just so he could help others.
Connecting with Ellie and her family made even more sense for Hall as Ellie aspires to be an Olympic swimmer. She knows it will take a lot of work and it’s starting with the Irvine Aquazots. She continues to improve, while doing her best to find the right blood sugar level to compete. Last summer, she competed in 10 events at the Junior Olympics.
Having mentors like Peirsol and Hall have helped Ellie tremendously. She gains great confidence from competing in swimming and training in the Newport Beach Junior Lifeguard program. That confidence helps her deal with Type 1 diabetes. It has helped so much that she has become an advocate and is also helping others upon diagnosis.
Hall’s career is a great inspiration for Ellie. He also encourages her with faith for the future.
Hall believes a cure is coming soon for Type 1 diabetes.
“I feel that we are closing in on the promise,” Hall said, referring to so many times hearing that a cure is coming. “My advice is to take care of it and manage it now because we are almost there. If you really manage it, anything is possible.”
The ‘fun’ in fundraising
“I love to swim because it shows who I am,” Ellie says. “I get to express myself in who I want to be and who I strive to be.”
Ellie thinks of this expression when she listens to Australian singer Sia’s “The Greatest,” with its lyrics saying “don’t give up” and “I’m free to be the greatest.”
Ellie’s strong will and positive attitude has been an inspiration to many, including her mother.
When Eva was Eva Zakrzewski she was an elite distance swimmer who began with the Mission Viejo Nadadores. She also competed for Mater Dei and then on to Yale.
Eva now wants to apply her athleticism to raise money for organizations like the National Stem Cell Foundation.
The past few months have been hectic, while training for the half-marathon, working with her own business of academic advising and planning for the family’s annual Derby at the Beach party, May 6 at Balboa Pavilion.
The Kentucky Derby party usually raises money for pediatric cancer in honor of Nick’s brother, Brian Scalzo, who died of cancer.
This year, they are also raising money for the CHOC endocrinology department.
It will be a busy weekend for sure for the Scalzos. The fun will be a bit toned down for Eva at the Derby party, as she will need to be ready to run the half-marathon the next day.
“I think she will be very excited to see mommy cross the finish line,” Eva said.
Eva will run with a special National Stem Cell Foundation jersey for the half-marathon. On the back it will read: “I run this for Ellie for a cure.”
“She is my inspiration,” Eva said of Ellie. “She goes through so much every day.”