Ari’s Story:

This is for my son, Ari, and this is his story.

Ari was born early at 32 weeks old, weighing just 3lbs 2ozs. Ari spent the following 39 days in NICU being cared for by the amazing team of nurses and Doctors at St. Joseph’s Hospital in Toronto, Canada. While in the NICU, Ari underwent daily tests and monitoring, and within a matter of days, he was diagnosed with Hydrocephalus and Dandy-Walker Syndrome.

At just 5 ½ months old, Ari underwent his first brain surgery to have a VP shunt placed in his head at Sick Kids in Toronto, Canada. As with any medical device, Shunts can break or become blocked. Unfortunately, our worst nightmare became a reality in January 2022. Ari’s Shunt malfunctioned and he had to undergo a second surgery when he was 3 ½ years old, at John Radcliffe Hospital in Oxford, UK.

Ari often refers to his Shunt as his “Shunt Hat”, so it is only fitting that we celebrate his 5th birthday by raising money and awareness for Harry’s HAT.

Ari spent 39 days in the NICU, so I will run 3.9 km daily for 39 days straight, ending on Ari’s 5th birthday. This is the equivalent distance of over 3 ½ marathons.

What is Hydrocephalus?

Hydrocephalus is a build-up of fluid in the brain. The excess fluid puts pressure on the brain, which can damage it. If left untreated, hydrocephalus can be fatal. A shunt is a medical device that is surgically placed in the brain to help drain fluid and reduce pressure on the brain.

Who is Harry’s Hat (Hydrocephalus Awareness Trust):

Harry’s HAT is a charity that helps to raise awareness of Hydrocephalus. Harry’s HAT supports research and funds training (for front-line medical, health, and social care workers) to further understanding of the condition. In addition, they provide peer-to-peer support and direct families affected by the condition to organizations that can offer support, advice, and guidance.

There is currently no ‘cure’ for hydrocephalus, so whilst organizations such as Harry’s HAT work together long-term with the hope of finding a cure, our focus is on the management of the condition.

All donations will be very gratefully received, thank you in advance!