Charlotte Ivy Studham

13-01-2009 - 3-11-2022

A wicked sense of humour, a love of life, a passion for dance, for Acro, outdoor activities and her family are just a few of the thousands of ways 13-year-old Charlotte (Char Char) Studham, of Bannockburn in Victoria, will be remembered.

For Charlotte, daughter to Brooke and Brandon, and sister to Indiana (17) and Dominic (10), life came with its challenges.

Diagnosed with FND functional neurological disorder at the age of 5, she lived a life that included many doctors, medical appointments, medication and constant monitoring.

Her epilepsy caused regular seizures. In the last four years these started happening many times a day. Despite countless tests, there was no clear explanation as to why they occurred. They could happen in a split second, at any moment, any day.

But Charlotte's life was more than just medical rooms. Her family, worked hard to make memories. There was a recent holiday to Cairns, including snorkelling on the Great Barrier Reef.

More recently, there was a trip with friends to Lake Eppalock where her mum, Brooke, remembers the freedom Charlotte felt at being able to explore the area with her friends, without mum trailing along behind. The location and the use of walkie talkies providing the reassurance that help was at hand should Charlotte start to have a seizure.

And there was dancing at Leanne McKiernan School of Dancing, a chance for Charlotte to be with friends and test her physical skills - while the dance mums watched from the canteen, quietly teaching each other to crochet.

For Char and her family, every day came with a mix of school, work, and activities, topped with constant anxiety and a fear of the unknown. Sadly, Charlotte went to sleep on November 3, and never woke up.

She passed away from suspected Sudden Unexpected Death in Epilepsy (SUDEP) which her family has since learned is similar to SIDS in babies. The name reflects the nature of the diagnosis - someone with epilepsy who dies prematurely and unexpectedly and with no reason for death found.

The Epilepsy Foundation (epilepsyfoundation.org.au) estimates about 171 people living with epilepsy die from SUDEP every year.

Brooke has started a GoFundMe page (Charlotte Ivy Studham) in lieu of receiving flowers in a bid to raise awareness of SUDEP and money for charities that support families living with epilepsy.

Visit here.

Brooke said if just one extra family was to benefit from the donations, it would be a success. As of November 16, supporters had donated $11,840 to the cause.