I've joined the Miles for Miracles team to help raise money and awareness for helping brave kids, like our family friend Tyler Simões, at Boston Children's Hospital.
Tyler sadly is not with us anymore as he went to his Father in Heaven in July of 2024, but his memory and spirit are still with us, making a positive impact.
I was inspired by Tyler's unwavering positive spirit and faith in God through many years of on-and-off painful hospital stays.
I am running to continue to bring the light and love of God that Tyler reflected in his 13 years on this earth so we can all be a small part of helping the next sick child needing medical care at Boston Children's Hospital.
Every dollar I raise funds the very best medical care, breakthrough research and vital support services for sick kids and their families. Your gift will:
- help children from your town and across the world get a second chance at life;
- give kids battling the most complex diseases care they can't find anywhere else;
- fuel 3,000+ researchers working to develop new treatments and cures;
- support patient programs, like music and art therapy, to let kids be kids, even during long hospital stays;
- help patient families in crisis with urgent needs, such as food, clothing and housing;
- deliver the most compassionate, leading-edge care to every child who needs it.
Please support my fundraising and help the incredible kids and families at Boston Children's Hospital.
About Tyler Luiz Simões
His was not a fight until the end. Rather, it was a fight for a new beginning.
Tyler was born to Danielle and Fabio Simões, brother of Yasmin, and the youngest of 20 grandchildren on his father's side. Even at a young age, Tyler was an old soul. He was a wise listener and his communities at Covenant Christian Academy and Netcast Church turned to him for advice. He connected with children, especially babies and toddlers who gravitated towards his warmth. His love of the color red reflected his energy as he ran across the soccer field and basketball court. His superheros were the Avengers, Diego Ribas, Cristiano Ronaldo, Devin Booker, and most of all, his dad. His sister always made him laugh. Their joy filled countless dance videos and every escape room they solved together. His mother was his North star - because of her, he saw beauty in all the women in his life.
He dreamed of going to Yale Medical School, and of having a family with five children. Even as he began to spend more and more time in the hospital, we were all in awe at how he still did so much. He helped with music therapy in the hospital and prayed for other children who were sick. He brought the Count of Monte Cristo to life for his classmates and his team on Hale 10. In some of his hardest moments, he cried - never as a complaint, but only as a wish for the simplest things so many of us take for granted: returning to school in person and being home with his family. He worried about his mom, who was always at his side and for his dad, who carried him out of school when he was in too much pain to do it himself.
Tyler lived a short life on this side of heaven. Yet, the memories below show how he moved so many hearts and souls, changed forever. Tyler created countless ripples of grace for all who knew him. His love for Jesus and his perseverance through unimaginable suffering were an inspiration to his medical team, school friends and their families, people from church, and even those who knew him only from afar.
Tyler fought the good fight for a new life - not only for himself, but also for others. His last words were from the song “The Goodness of God.” In the end, Tyler did not get his miracle over the disease. But we got Tyler and the miracles he made for all of us.
Here is some info about what Tyler battled
Rac2 is a protein that turns on the cells in our immune system to keep us safe from infections. Our immune cells rely on Rac2 to maintain a healthy balance between activated and resting states.
How do changes in Rac2 cause illness?
In Tyler, a genetic change turned Rac2 on at all times. As a result, his immune system was always in overdrive, resulting in autoimmunity and immune dysfunction.
What is immune dysfunction?
In immune dysfunction, the immune system can attack our own organs. When in overdrive, the immune system may not be able to generate enough immune cells to fight viruses and bacteria, leading to life-threatening infections.
What's the cure?
Bone marrow transplantation is currently the only way to cure disorders caused by RAC2. Sadly, not everyone has a good bone marrow match. The unpredictability of this disorder is another challenge: Tyler and his family never knew when the next infection or challenge would arise. They are developing better laboratory tests for identifying overactivated immune cells so we can get ahead of the disorder.
