Hi, my name is Gracie.

I'm creating this fundraiser in memory of my sister, Maddie, who sadly passed away on the 9th of October after her courageous battle with Hydrocephalus.

What is Hydrocephalus?

Hydrocephalus is a build-up of cerebrospinal fluid (CSF). This condition ultimately stops the fluid from draining or being absorbed properly, causing the ventricles, or cavities within the brain, to enlarge.

This can lead to a range of physical and cognitive effects, and if untreated, can be fatal.

It is predominantly seen in infants or adults 65 years and above. The possibility of an adult from 18-64 developing hydrocephalus is very low, with a rate of approximately 11 cases per 100,000 individuals - exactly 0.011%. Maddie was 22.

This condition did not define my sister, but it took so much from her, and ultimately everything from us.

Without the right care and treatment, hydrocephalus can cause permanent brain damage, cognitive impairment, and potentially death.

Maddie fought everything that life threw at her, she stayed strong and continued to unapologetically be herself.

For the rest of my life I will forever be proud of my sister and how brave she was and had been since her diagnosis in 2023.

I truly hope that continued research and understanding of hydrocephalus will lead to better outcomes, so that other families won't have to experience the same heartbreak ours did. Watching my sister struggle was agonising, and I hope that as more is understood about this condition, no one will have to feel a sense of hopelessness ever again. If her struggle can inspire more learning, more awareness and more hope for others, then her story will continue to make a difference.

During Maddie's final week, she was cared for by the wonderful team at St John's Hospice in Balby, Doncaster, who made her final days peaceful and full of kindness for both her and our family who were with her every step of the way. We will forever be grateful for their support.

To honour her memory, my family want to give back to the people who helped her so much. We also want to give back to an organisation that holds a special place in our hearts. All money raised (whether it's on the day of Maddie's funeral or through this GoFundMe) will be split between St John's Hospice, so they can continue providing care and comfort to other families in need and also to Shine - Spina Bifida and Hydrocephalus, a charity which provides specialist support for anyone living with hydrocephalus or spina bifida, as well as to parents, families, carers and professional care staff.

We know that not everyone will be able to attend Maddie's funeral on the 11th of November, but with making this fundraiser, this is a way for anyone who wishes to do so to contribute in Maddie's memory,

Your kindness and support means the world to us. Every donation, no matter the size, helps keep Maddie's memory alive and continues the work of those who made such a difference in her life and our lives and will continue to do so for others.

Thank you for remembering Maddie with us. Xxx