Rachel Irene Hess

March 23, 1991 – June 24, 2023

Rachel Irene Hess (32) passed away on June 24, 2023, due to complications associated with her lifelong medical condition of MPS I – Hurlers Syndrome.  She was born on March 23, 1991, in Hoffman Estates, Illinois and lived all her special childhood and young adult years in Arlington Heights (NW Suburbs of Chicago), IL.  She is survived by her Mother, Michelle (Ferreri) Hess; Father, Robert Hess; Sister, Jessica Hess; Grandmother Marilyn Hess; Grandparents Patrick and Patricia Ferreri; Aunts and Uncles Joni (Rick) Jarvis, James (Lorrie) Hess; Donald (Lisa) Hess and Rose (Chuck) Bearden.

She was preceded in death by her Grandfather Wilfred Nicholas Hess (94) this past February and by special mention many children and young adults of incredible strength and loving being in her mucopolysaccharidoses (MPS) and mucolipidosis (ML) lysosomal storage disorder community.

Rachel was so deeply and unconditionally loved; she was pure love.  She lived life with zest, zeal, zip and with so much grace and iconic bravery.  We should not remember Rachel in any form or fashion as someone who suffered or was for want of a better life.  Remember her for her perseverance, grit, love of life, love of family, sense of humor, always wanting to go places that bring her joy and others new experiences, and how she carried herself in times of extreme daunting challenge.  She was 32, had over 20 surgeries since the age of 4, lost her sight at 5, had a Bone Marrow Transplant at the age of 6, and the list of other challenges is long.  But the medical condition is not the memory folks, the takeaway is her witty one liners, incredible infectious smile, gentle nature, love of a good meal and family time, her unique bike that allowed her to feel the wind her face, the braille books and piano that she read and played with those special hands.  Rachel never complained and never said a cross word to anyone.  The story here is taking her story to the world and making it a better place.  Go do that and rejoice.

Think about this, when she was 5, we needed a bone marrow drive to save her, and 3,000 people showed up at a community center to register for help, volunteer to be tested for a match.  Most recently a young child met Rachel (when most shy away), asked why she was different and why she walked with a cane. It was explained to this child that Rachel used the cane as her eyes!  The child then said, "oh, I get it, she is like a superhero".  Think of how many lives Rachel saved that day at the community center...and yes, the superhuman love she has gifted us all with since then, and everlasting.

We want to send a special thanks to all those who touched and shaped Rachel along the way: from her early teachers at Westgate Elementary, K-12 and transition program at Miner School/NSSEO, and in her last years with the angels of NWSRA and the PURSUIT Program who supported her so well and gave her the dignity that she deserved.  Much love to her decade+ piano teacher JoAnn Snyder who encouraged, taught and enabled her to make beautiful music.  Galactic love and thanks to her caregiver Carly (Garcia) Mandernach and family, who helped Rachel feel special and excited about goodness and normal life things.

An open house celebration of life will be held from 11:00 am to 4:00 pm on Sunday, September 10, 2023, at Metropolis Ballroom of Arlington Heights - 6 South Vail Avenue - Arlington Heights, IL 60005 - 847.870.8787.  https://www.metropolisballroom.com/

Memorial contributions will be most welcome to the following organizations:

SLSF (mention PURSUIT Program) https://www.slsf.me/

MPS Society  https://mpssociety.org/