CHICAGO, IL – Inspired by the life of one very little but courageous being, the Be Great Alexander’s Foundation for Children last month hosted its first Chicago fundraiser raising some $8,000 for clinical research.
About 100 individuals gathered on a Wrigleyville rooftop to mingle and watch a Chicago Cubs baseball game all in support of a worthy cause.
The Be Great Foundation was born of the story of Alexander James Plotas, who passed away in September of 2011 at 13 months, due to respiratory complications from a severe form of immune deficiency after a successful bone marrow transplant.
“My son was only 13 months old and he lived six months of his life in a hospital but he overcame things that would have been catastrophic for any adult,” said Alison Plotas, co-founder of the Be Great Foundation.
“His will to fight helped us persevere and move forward. He had the gift of being a child waking up each day happy without expectations of how his day would turn out.”
The Rockville, MD-based foundation’s mission enables advancements in curative treatments for children with immune deficiency by supporting improvements in bone marrow transplantation, medical equipment, and education programs for parents.
Immune deficiency affects as many as 1 million Americans and 10 million people worldwide, while one in every 33,000 newborns is estimated to have Severe Combined Immune Deficiency (SCID).
Proper newborn screening is crucial for affected infants since their condition is not evident at birth. Unless diagnosed and corrected with early treatment, this disease is fatal, as affected infants succumb to opportunistic infections before their first or second birthdays.
“As parents, the number one thing you want when your child is sick is to know what’s wrong and how to treat it. You want every answer one minute faster than everyone else. You want your child to be well. That’s all you want,” Plotas said.
“Our goal is to obtain medical answers faster and to get children with immune deficiencies diagnosed sooner so that they have a chance to live a healthy life. Every child deserves to be healthy and the chance to be great,” she added.
Be Great was launched just 7 weeks after Alexander’s early passing, and while he was just over a year old at the time, his legacy lives on in the foundation’s accomplishments.
In just two years after establishment, the foundation raised over $100,000 for various medical programs combating SCID. These include the goal of raising $5 million to build the Center for Diagnostic Immunology and Transplantation at Children’s National Medical Center in Washington, DC; providing cord blood donation kits to expectant parents; delivering bone marrow transplant family orientations; and creating programs to fast track diagnosis following positive newborn screening for SCID.
“In just 2 ½ years of being a foundation, we’ve increased awareness of immune deficiency and established the Center for Diagnostic Immunology and Transplantation,” Plotas said. “I’m incredibly proud of the work we are doing,” she added.
SCID has in recent years gained more national attention, and in June, the state of Illinois added SCID testing to newborn screening, bringing the total number of states screening for his deadly disease up to 21.
The Be Great Foundation raises funds to support families facing SCID by hosting a number of events and activities including an annual Seek and Find public outreach, charity walks, and privately hosted Eat and Be Great home dinner parties across the country.
The heartwarming response received from generous contributors, supporters, and partners since the foundation’s inception in 2011 is a testament to Alexander’s life.
A smiley and determined boy with angelic blonde hair and welcoming blue eyes, Alexander has today through his journey, helped other sick children and their parents who are going through difficult medical situations.
“There’s a reason we were on this unexpected journey with him…there was a reason he was our son and we were his parents and after going through our unexpected journey together we knew that there were many other families that could benefit from Alexander’s journey,” Plotas said.
Though Alexander’s journey included many infection-related obstacles and over 160 hospital days, he remained cheerful. And while he didn’t have words yet, Alexander inspired those around him to face challenges and enjoy life.
In his mother’s words, Alexander’s message to the world is this:
“Smile a lot. Be happy. Don’t complain. Take it as it comes.
It’s a beautiful day every day. Press forward and stay calm.
Remain hopeful and trust that things will work out.
Look into my eyes and see that I am NOT afraid.
Take courage from me and be strong.
Things may get darker before the light shines through.
Enjoy each day without expectation.
Smile a lot. Be happy.”
A fourth-generation Chicagoan who studied abroad in Greece, fell in love with the culture, and attended Annunciation Greek Orthodox Cathedral on LaSalle Blvd., Plotas lives in Rockville with her husband, Panagiotis, and their two children, eight-year-old Ariana Christina, and one-year-old Constantine Ariston.
“Alexander’s legacy and his reach even three years after leaving us continues,” Plotas said. “It’s incredible. My heart smiles and I find renewed strength on the difficult days,” she added. Alexander would have turned four years old on July 29th. After a successful fundraising event, the foundation plans to be back in Chicago in the near future. To learn more about the Be Great Alexander’s Foundation for Children, visit begreatfoundation.org.