Our Story
& Mission
About Grace. Her Story.
Our Hopes and Mission.
Grace's cancer was CURABLE.
Her treatment plan was developed by leading childhood cancer specialists that had confidence in her journey
towards healing. Instead, it blindsided everyone involved, without hope for Grace's recovery on earth.
Her story led us to the devastating realization of how little the 100+ known subtypes of childhood cancer are researched. It revealed very indisputable truths, such as only 4% of federal funding being contributed to childhood cancer research.
Each year, the Grace Irwin Memorial Fund will host a scavenger hunt. A fundraiser event that honors the life of little Grace and every family that was or still is battling the unimaginable.
It is our mission to create awareness for the existential need of childhood cancer research
and it is our pursuit to close-in on the gap of the most significant hunts of our time:
the HUNT FOR THE CURE.
Her
Story
Our
Hope
Grace Irwin was a beautiful, vibrant eight year old girl. She had a love for baking, her friends and family, cats, science experiments, babies, soft and squishy stuffed animals, worship music and Jesus.
She was a smiley, amazingly bright light to everyone that knew her. She was happy, kind, generous, healthy, and everything you could ever ask for in a daughter, sibling, granddaughter, niece, cousin and friend.
GRACE KATHRYN IRWIN
June 12, 2014 - July 23rd, 2023
In December 2022, Grace complained of double vision all of a sudden. After visiting an eye doctor, she was referred to get further scans, to see what was causing the vision issues. On December 23rd, 2022 she was admitted to the hospital for what CT Scans showed as a bad inner ear infection. MRI scans were done that evening to prepare for surgery the next day.
On the morning of Christmas Eve, as they were prepping Grace for ear surgery, her parents (Erica and Jake) were pulled aside and given the news no parent ever wants to receive. MRI scans were showing that it looked more like a tumor behind her left ear. The inner ear infection surgery was now a biopsy procedure.
After a couple hours of waiting, the ENT came out to tell Jake and Erica that it was indeed a tumor behind her left ear and he was almost certain it was cancer. He would send the biopsy out for confirmation but Embryonal Rhabdomyosarcoma was what he suspected. That Christmas Eve, Grace and her parents spent the night in the hospital, waiting for a meeting with an Oncologist on Christmas morning.
On December 25th, Jake and Erica sat with the Oncologist to review scans and hear what the prognosis was. They were told it would be a fight but this was very treatable and curable.
In early January, Grace had her first chemotherapy treatment. Her treatment plan was a total of 42 weeks of chemo and 6 weeks of proton radiation therapy.
All was going as expected until the middle of May when Grace started to get some new, intense symptoms. Untreatable headaches, dizziness and nausea began to worsen. She was admitted to the hospital multiple times where they would run MRI scans and spinal taps. Each time, Grace would be discharged with no real answers to what was causing the new problems.
In late June, during another hospital admission, they finally were told the cause of her worsening symptoms. A MRI of the spine and brain showed that the cancer had spread into the meninges of her brain and spinal cord. The same scans that a week earlier showed no evidence of disease.
After further discussion with her team of doctors, Jake and Erica were told that Leptomeningeal disease is not able to be treated as chemotherapy cannot penetrate the areas where the mets were. Jake and Erica were then given the impossible task of trying to decide whether to pursue treatments to extend life by a couple weeks or to take Grace home and make her comfortable for whatever time God had for her.
During this time a shunt was placed in Grace's head to help spinal fluid drain and provide her with relief from her headaches. This would greatly improve her quality of life. After much prayer, many tears and discussion with specialists from around the country, the decision was made to take Grace home, to end her suffering and surrender her life to God while begging to miraculously heal her.
The next month was spent with family and friends doing the things she loved. Sunsets at the beach, baking and even her own cat who turned out to have kittens a week later. There was much joy during this time as everyone that loved her soaked up everything about her.
After exactly one month at home under hospice care, God did ultimately heal Grace in Heaven on July 23rd, 2023.
Over the course of her courageous seven month battle, Grace never once gave up and continued to press on in whatever circumstances she was handed. She held to her faith in Jesus till the very end of her life here on earth. She continually pointed others back to her faith and was the first to say that Jesus was always with us.
We believe she is healed and home in Heaven, celebrating as she waits for us to join her one day.
Grace had a heart for giving and was always ready to help those in need.
In light of her home-going, as her family, we would love nothing more than support much needed childhood cancer research.
Grace's cancer was curable and blindsided everyone involved. Our hope is that one day another family can be spared the loss we had to experience; that there will be more treatments and more knowledge about cancers that ravage children.
We hope you come alongside us, as we lock arms to raise awareness and financial contributions for all the precious children battling this monster of a disease.
All donations to the Grace Memorial Fund as well as all proceeds from each Annual Hunt for the Cure will solely benefit our cause.
Be part of the
1st Annual Hunt for the Cure
on February 17th, 2024,
on Anna Maria Island.
The first annual Grace Irwin Memorial “Hunt for the Cure” will take place on February 17th, 2024 at The Center of AMI. This will be an island wide Scavenger Hunt Event, concluding at The Center of AMI for food, drinks, entertainment, silent auction, raffles and prizes.