Rare and severe – how one might
help
www.cats-foundation.org
The CATS Foundation

Founded in 2011

Provides equipment, respite trips and a support network

Support the research for a potential treatment
www.cats-foundation.org
What is Tay-Sachs

Terminal illness in children

Inability to produce a vital enzyme

Genetic condition

Autosomal recessive inheritance

Affects 1 in 320,000

Carrier rate of 1 in 300
www.cats-foundation.org
Symptoms of Tay-Sachs

Lose the ability to walk and crawl

Lose all verbal skills

Lose their vision

Lose their hearing

Swallow becomes impaired

Unable to eat independently

Total regression in all their skills
www.cats-foundation.org
How one might help
www.cats-foundation.org
How one might help
Child
www.cats-foundation.org
How one might help – team
Carer
Child
www.cats-foundation.org
How one might help – team
Healthcare
professionals
Carer
Child
www.cats-foundation.org
How one might help – team
Healthcare
professionals
Patient
organisation
Carer
Child
www.cats-foundation.org
The team goal
www.cats-foundation.org
The team goal
Quality of life
www.cats-foundation.org
The team goal

Make a child’s quality of life as high as possible

Everyone can work together to achieve this goal

Each team member has different skills
www.cats-foundation.org
Managing expectations

Break down of communication can cause problems

Must bring people together

Work towards a combined goal of improving quality of life
www.cats-foundation.org
Managing expectations

Break down of communication

Bring people together

Have a goal of making quality of life as high as possible
That is how one might help
www.cats-foundation.org
This is why it is important
www.cats-foundation.org
Thank you
Email: dan@cats-foundation.org
Website: www.cats-foundation.org
www.cats-foundation.org