Help Mila get to a life changing medical trial.

Mila, a wonderful, beautiful, funny, cheeky, caring five year old girl.

Mila has been diagnosed with a rare degenerative neurological disease known as Vanishing white matter. It is a type of leukodystrophy.

It effects the nervous system and causes neurological symptoms.

The condition causes deterioration of the brain due to a genetic defect. White matter deteriorates, interrupting the signals the brain should be sending to the body.

It already affects Milas ability to walk properly, she has stiff muscles and muscle spasms. As it progresses her mobility issues will get worse. It may progress to cause seizures and lethargy and affect her ability to chew, swallow and even breath. Eventually resulting in a coma and death. It is thought she is unlikely to make it to adulthood.

Things that can cause a sudden deterioration are minor head trauma and fever.

Last year she was fine then suddenly after a minor fall she couldn’t walk for a few weeks, that’s how quick things can change.

It is such a rare disease there are currently only around 200 cases in the whole world.

When Mila was finally diagnosed in April of this year we were told there was no treatment and that all we could do was treat symptoms as they arose and make the most of the time we have left with her.

A few months later we became aware of a medical trial that had just started in Amsterdam using a drug called Guanabenz to treat Milas condition. It is thought the medication may stabilise and possibly even improve the condition.

Finally some hope!

Milas medical files and mri images have been sent to the doctor’s and they say at first glance she looks eligible but we await confirmation.

However we need to be ready to take her over there. She will likely be there for many weeks on the first visit possibly a couple of months. There will be up to 4 follow up visits over the course of the following year also.

This is where you wonderful people come in. It’s so hard to have to ask for help but here we are asking for it for our beautiful daughter, because she deserves the best. She deserves life. We need your help to get her there.

You donation will go towards travel, COVID testing, day to day expenses, unexpected expenses and hopefully some nice treats/days for Mila to alleviate the stress of all the medical tests and hospital visits she will have to endure at such a young age.

We as a family can not begin to tell you how much your help means to us. This has been the hardest thing we have ever had to come to terms with, but now there is hope!