Eloise Suzanne Havey was born July 10, 2016. From the moment she entered this world she brought nothing but light and love.

 

At 10 months old, in May of 2017, Eloise woke up from a nap blind and deaf. Her parents, Adam and Colleen, took her to Ann & Robert H Lurie children’s hospital where they spent 12 days working with doctors to figure out what was going on. In that time Eloise’s hearing came back but her vision was still gone. At the time of discharge, there was no diagnosis. They only knew after an EEG and MRI that she was having subclinical seizures in her occipital lobe.

 

After a lengthy genetic test, it was revealed that Eloise had a rare PolG Metabolic mutation known as Alpers. The diagnosis was grim, and her life span was estimated to be short. At the time of diagnosis it was believed she only had a few months left to live. It was at that moment that Adam and Colleen decided it was time for Eloise to take on the world. They dedicated the time left to making memories, traveling to see family, and absorbing every moment they could with their sweet girl. The goal was to fill her life with as much love as possible.

 

As the months went by, Eloise began to show everyone how strong she was. She regained her vision. Her liver, which was once heading towards failure, began to heal. By the time the professionals thought she would be reaching the end of her life it was evident she was beating the odds.

 

This was only the beginning of Eloise’s story. With every day that passed, Eloise showed the world what she was made of. Eventually walking, talking, having playdates, traveling, going to preschool- she truly began to take on the world.

 

This strong and opinionated girl had a love for cheese and blueberries. As soon as it was warm enough, she wanted to spend every day swimming in a kiddie pool. She loved to go down to the beach near her house and dig in the sand or stick her toes in the water. She would insist on bringing buckets full of beach rocks back home. She learned to count and would eagerly show you how she could count any object over and over and over again. Eloise developed an obsession with dice, you knew she had been there if there was a random die left behind. She loved to swing on her swing set and pretend her toes were reaching the moon. She had an obsession with her home. She could tell you it was made of brick. Her favorite moments were cuddled up on the couch watching Dora the Explorer, Go Diego Go, Peppa Pig, or Elmo with her mama and dada.

 

The biggest thing about Eloise was the way she loved. Every hug was as tight as she could get it, every kiss had force, and every hand hold was a connection to never be broken. When she told you she loved you (which was often) she meant it.

 

Eloise had a way of uniting people. Her smile and instant warmth to strangers made everyone feel connected. Her energy was captivating. Her joy was contagious.

 

On September 2, 2021, Eloise was once again at Lurie Children’s hospital for what was hoped to be a minor infection. Unfortunately things quickly took a turn and after a 7 month battle in the ICU Eloise went to rest on April 13, 2022.

 

Eloise is missed every single day. Her parents may not be able to hold her in their arms any longer but they are determine to continue to carry her with them forever.