Fundraiser for Finn the Heart Warrior

I met Finn's mother Aimee in an online photography community. She was one of those people who was always helping and encouraging others. We connected on a deeper level because we both have sons that are heart warriors, but her sweet son Finn has had to face too much in his little life including, most recently, a heart transplant along with the diagnosis of a rare disease. The cost of a transplant is astrononmical and doesn't just stop there- Finn requires different treatements, testing, and medications on a daily basis, so his body does not reject this new heart. These funds will be used on their medical expenses and caring for Finn. Please consider donating- no amount is too small. If you want to learn more about Finn's story read below.

Written by Finn's mom, Aimee:

Mr. Finn came into this world a born fighter with a severe congenital heart defect. At just a few hours old he had his first heart surgery; the first of a 3 stage palliative surgical course that once complete, would bypass the entire right side of his heart leaving him with only half a heart. He only had a 50% chance of making it to his 1st birthday, which he did! The final open heart surgery, the Fontan, was completed in June 2021 and was promised to give him decades living a somewhat typical life before need for further medical intervention. However, his fight was far from over. Nobody could have ever predicted what came next.

In August 2021, after almost 4 years of being isolated, Finn was given permission to attend school for the first time. He was just starting to find his way, make friends and gain confidence around other kids when he contracted RSV. A respiratory illness that is notoriously dangerous for kiddos with CHD’s. Finn was able to recover at home with supplemental oxygen but a couple of weeks later his parents started to notice unusual symptoms. It was then discovered that only 5 months post Fontan, Finn was in severe heart failure with new onset diabetes of unknown cause. Over the next few months Finn was subjected to daily blood draws and tests as multiple specialties struggled to find the source of both the heart failure and diabetes. With no answers or even a hunch in sight, Finns condition worsened and he was admitted to Primary Children’s Hospital on February 22 to await heart transplantation.

During his hospital stay Finn continued to undergo numerous tests and finally, a complete genomic sequencing gave them the answers they had been searching for. The results revealed that Finn had an extremely rare neurodegenerative disease called Wolfram Syndrome. Overtime, with any stress, the cells in his body start to degenerate and die causing optic atrophy, diabetes mellitus, diabetes insipidus, hearing loss and brain stem atrophy. There has been no other recorded case of WS with a heart defect as rare and severe as Finns, so his prognosis is largely unknown and treatment options are experimental at best.

On April 11, Finn received the gift of a new heart and is currently in the CICU at Primary Childrens Hospital with a long road to recovery ahead of him.

It is a common misconception that a heart transplant is a cure. In reality It is merely exchanging one set of problems for another. A transplanted organ typically only gives a recipient 10-15 years living with many restrictions, lifelong medical intervention and complete immunosuppression. His risk of cancer, infection and rejection will burden him his whole life.

At only 4 years old, Finn has faced more than most adults will in a lifetime. But despite the hand he was dealt, Finn is the most precocious 4 year old you will ever meet. He is so smart, funny and articulate; he is already reading, spelling, doing math and loves learning about science. He loves classical music, candlelit baths with bath bombs and deep conversations. He is truly an old soul with a mission to change this world. To do this he will need to be monitored closely by numerous medical specialists and require some of the most expensive life-saving and innovative medications and interventions his whole life. These expenses will continue to accrue over the course of his lifetime.