In June 2016 we received the devastating news that our niece Holly had been diagnosed with a rare life limiting disease called Niemann-Pick type c. Holly lost her battle to this horrible disease in 2019 at just the young age of 4

http://www.npuk.org

Niemann-Pick diseases are a group of rare inherited lysosomal storage disorders that can affect both children and adults, NP-C is a devastating neurodegenerative disease caused by an accumulation of lipids (fats) in the liver, brain and spleen, symptoms of NPC can be the following and lots more.

Enlarged spleen and liver
Problems in walking
Slurred irregular speech
Learning difficulties
Progressive intellectual decline
Swallowing problems

Holly was able to sit, stand and crawl when she was diagnosed but in the she quickly lost these abilities and had numerous stays in hospital and then passed away in 2019.
through out all of this we as a family have received support from the charity NPUK. They are an amazing group of people who offer support in anything from helping to get equipment, filling out forms or just a shoulder to cry on when things get tough, the monies raised will go to help fund research into new therapies and hopefully maybe one day a cure.

We would appreciate anyone who would like to sponsor us and donate where you can. :)

To raise awareness of this devasting disease we are taking part the inflatable 5k event in chesire.

Thanks for taking the time to visit my JustGiving page.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.