Sean Carl Heiman

He was born July 13, 1998 in Denver, Colorado to Julie Elaine Helton-Heiman and Kim Bert Heiman.

Sean possed Extra Fingers and Webbed Toes? (Written by Julie Heiman, Sean’s mom)

The first thing the doctors asked Sean’s parents when he was born was, “Do extra fingers and webbed toes run in either of your families?” Our response was “WHAT?” Upon hearing this question, our baby was swarmed by every doctor and nurse on duty just after midnight on July 13, 1998. Many thoughts were going through my head. “Why are they not letting me see my baby?” “Why do I not hear the baby making any sounds?” “Why are there 20 doctors and nurses surrounding our perfectly beautiful baby?” After that first question was asked, the next 72 hours were a blur. We heard things like, “Your baby has many birth defects. Your baby has an extra finger on one hand and a partial extra finger hanging by skin on the other. He has a cleft soft palate. Your baby could be deaf and blind. We need to call in a neonatal specialist, a urologist and a geneticist.

Over the next several days, we spoke to many different specialists. We were actually lucky in the sense that our baby had many similar birth defects as little girl born at Porter Hospital four years earlier. We were told that our baby likely had a genetic syndrome called “Smith-Lemli-Opitz Syndrome.” They needed to do a blood test to check our baby’s cholesterol level, because children born with Smith-Lemli-Opitz Syndrome have a very low cholesterol level, which causes many birth defects. Needless to say, this was all heart breaking and a very difficult time for Kim and I.

We had recently watched the movie “Indiana Jones and the Last Crusade.” I told Kim, I like the name Sean spelled S E A N (after Sean Connery) for his first name, and Carl for his middle name after Kim’s dad and my mother’s dad, (both named Carl) and my mom, whose name was Carla.

Sean faced many medical challenges in his life. He had to have a gastrostomy tube placed and had a colostomy surgery at three weeks old. He had an emergency tracheostomy surgery at 3 years old. At 13 years old, he had a surgery to place super-pubic catheter. With all the medical challenges Sean faced, he was a very strong but super happy kid. At birth, the doctors didn’t know Sean’s life expectancy. He might have only lived a few months, a few years, they just didn’t know. In 2012, Sean had a severe kidney infection, pneumonia and sepsis. The doctors told us to prepare for the worse. Sean overcame that illness and lived ten more beautiful, happy years. At that time, Kim and I gave him the nickname, “Captain America.” Of all the comic book super heroes, Captain America started out as a weak man with a huge heart who became a super hero and saved the world many times. Sean was our super hero and he brought so much joy to his parents, grandparents, half-brother, aunts, uncles, cousins, a multitude of extended family members, friends, doctors, nurses and therapists.

Sean loved music. From a baby to a young man, he loved listening to all kinds of music. He loved musical infant toys. Anything that played music and would light up. He loved pushing the buttons and pulling the levers to activate his toys. After a time when he should have grown out of infant toys, we continued to buy him these kinds of toys. They brought him great joy. Of course, some of these toys were delicate as they were made for small babies and infants. Sean would get so wild at times with his toys, he would bang them and knock them off of his wheelchair tray. We started calling him “Bam Bam.” When Sean was about 15 years old, we interviewed music therapists to come and do music therapy sessions with Sean. We met a lovely music therapist and she did music sessions with Sean for the last 8 years. Sean loved his music sessions. Amy had him strumming the guitar, banging the triangle, tambourines, hitting a cowbell, shaking maracas and more. Music brought so much joy to Sean’s life.

Sean was a happy, easygoing, kid with a HUGE smile. Sean didn’t know the troubles of the outside world. He was lucky in that respect. He attended pre-school and elementary school up until 3rd grade. The little girls at Sean’s school loved him. Sometime if Sean was overstimulated, one little girl with put her hands on Sean’s cheeks and say in her tiny voice, “Oh Sean, Don’t Cry!” Due to Sean’s weakened immune system and his frequency of getting sick, we took him out of public school. Sean was much healthier at home. His Grandmother, Carla, quit her job when Sean originally came home from the hospital and she took care of him full time until he was six years old and then part time for many years. Sean’s world was small, but along with his grandma, we had many wonderful nurses who helped take care of Sean so we could continue to work. Many of these nurses became family to us. Along with his music therapist, he had a wonderful physical therapist, several speech therapists, and a terrific occupational therapist.

Sean is survived by

his parents – Kim Bert Heiman and Julie Elaine Heiman; Siblings – Joel August Heiman (Marisa Heiman); His Nephew and Niece – Jameson Heiman and Sophie Heiman.  Sean is survived by many aunts, uncles and cousins too.

He was preceded in in death by a Grandmother – Henrietta Elizabeth Heiman-Dale: Grandfather – Carl Heiman, Grandfather – Ralph Dale, Grandmother – Carla Jean Helton, Grandfather – Richard Vaughn Helton; A Cousin – Jessica Jean Page-Hansen; Second Cousin – Bailey Fox Hansen.

A memorial for Sean Heiman (along with his deceased grandfather, Richard Vaughn Helton), will be held on Sunday, August 7, 2022, from 11:00am to 3:00pm at Olinger Andrews Caldwell Gibson Funeral Home and Chapel: 407 Jerry Street, Castle Rock, Colorado 80104

Memorial donation suggestions, Sean’s Parents wish for donations in his memory go to the SLO Foundation – PO Box 10598, Fargo, ND 58106

Three words that sum up Sean Heiman: Sweet, happy and strong (like Captain America)

Favorite Prayer that his grandmother, Carla, and mother, Julie would say to him: Now I lay me down to sleep. I pray the Lord my soul to keep. If I shall die before I wake. I pray the Lord my soul to take.

Fond memories and expressions of sympathy may be shared at www.OlingerAndrews.com for the Heiman family.