Leo Robert Simon

Leo Robert “Bobby” Simon, age 4, passed away peacefully in his favorite place - at home with his family in Barrington, IL on January 25, 2024, after a long battle with Menkes disease. 

Leo was born at Lutheran General Hospital in Park Ridge, IL on March 20, 2019, to Jeremiah Simon and Kaycee Jakubowski. Upon learning of issues with his newborn screening at birth, he was admitted to the NICU where he stayed for almost a month with no diagnosis made. Leo was a beautiful and happy baby with some delays, and then, later, seizures. This led his parents to feel that something was not right and so began a long and difficult search for answers. 

After searching for a diagnosis for 11 long months, Leo Robert was diagnosed with Menkes disease a little before his first birthday. This breakthrough was achieved thanks to the specialists at Lurie Children’s Hospital and an unwavering passion by his mother to get answers. Placed into hospice before his first birthday with a very unhopeful prognosis, Leo Robert surpassed all expectations and lived a full life until he was almost 5 years old. Leo also bravely took part in a clinical research trial that consisted of copper histidine injections for almost 3 years to help improve the quality of life for future children afflicted with Menkes disease. 

A life filled with purpose and joy, his days consisted of playing with his siblings, school with his favorite therapists and teacher, Ms. Nancy (who taught him to play the guitar), chiropractic adjustments, aqua therapy, equine therapy, and visits from his favorite hospice nurses, Sheila and Marjorie. 

Leo loved life, laughing, Coco, Moana, everything that involved music or singing, being out and about, football games, swimming, horses, and being with family.

Leo had a love for animals that was unmatched. He would ride his favorite horse, Pearl, numerous times a week. Leo also found joy in playing with his beloved pets, Bella and Bagheera. An avid football fan, he was an honorary captain at the Algonquin Argonauts 11u 2023 football games and loved attending all his older brother’s sporting events when he was able to so that he could cheer him on.

In addition to his parents, Leo is survived by his grandparents, Lisa Simon, Jeremy (Michelle) Simon, and Mary Jo Jakubowski; great-grandparents, Tonina and Tom Balicki; siblings, Arya, Niko, Boone, and Grace; aunts and uncles; and his cousins, Giovanna, Ronald, Fiona, and Liam. 

Leo’s life was a message to all of us to live our lives to the fullest, enjoy every day, and to live each day as if it were your last. We thank everyone that helped make Leo’s life as meaningful as possible: Dr. Stephen Kaler, PWC Chiropractic; his favorite chiropractors, Dr. Jake and Steph; all his occupational, physical, and speech therapists from the Barrington ELC and Shirley Ryan; Mandy; all the horses he rode; his equine therapists at Partners for Progress; as well as his aqua therapists.

As his big brother Niko would say "Leo never quits, Leo never backs down.” 

Leo was the epitome of strength, sassiness, and living for a purpose. He had the most beautiful soul to ever exist and was a ray of hope shining in the lives of everyone that he encountered in his short time with us here in this world. He woke up and went to bed every day with a smile on his face. His laughing and giggling are sounds that we miss more than words can express. Leo was the bravest, strongest, silliest, beautiful, most hopeful little boy and was almost always seen with a smile on his face. 

Words cannot express the devastation and emptiness felt by his family and all he met upon his passing. We hope that Leo’s life can be an example to all that a diagnosis is not the end but the beginning of a beautiful and meaningful life with purpose, no matter how dim the future may seem. He will be deeply missed.

“Remember me, though I have to say goodbye, Remember me, don't let it make you cry, For even if I'm far away, I hold you in my heart, I sing a secret song to you each night we are apart...." (Coco)

Until we meet again in heaven, Leo Bobby. WE LOVE YOU.

For more information on Menkes disease please read here: Menkes Disease

For more information on equine therapy and where Leo rode horses please visit Partners for Progress Therapeutic Equestrian Center