Taraysa age 3 batten disease

Hi my name is Ashley I have set up this page on behalf of my sister Stacey her husband Mike and her daughter . Teraysa age 3 .from Christchurch Dorset

Teraysa was sadly diagnosed with Batten disease last week, also known as neuronal ceroid lipofuscinoses (NCLs), is a rare, fatal, and inherited genetic disorder that impacts the nervous system and brain. It's caused by mutations in more than a dozen genes that disrupt the body's ability to break down cellular waste. This build-up of proteins and fats throws cells off balance. Symptoms usually appear in childhood, between the ages of 5 and 10, and worsen quickly. Batten disease life expectancy varies significantly based on the specific type and age of onset, but it is generally a fatal condition. Children with early-onset forms may only survive a few years after symptoms appear, while those with later onset may live into their teens or twenties.

teraysa will need to go to Great Ormond Street hospital for enzyme replacement therapy . This enzyme replacement therapy is administered via intraventricular infusion (directly into the fluid surrounding the brain) every two weeks. While it can slow disease progression, it does not reverse the condition.

As I’m sure you will understand this treatment will involve a regular commute to London which can be costly . Also as her disease progresses her needs will change too. This money will go towards giving Taraysa the best quality of life and create the best memories for Stacey and her family On behalf of myself and my sister Thank you so much for your support.