Last summer I participated in multiple sportives such as CFC Sportive 100miles -Wolf Run 10k - Wolverhamptom to Aberdovey Bike Ride 125miles - clunn sportive 90 miles- nottingham epic 101 miles -Autumn Epic 100 miles - Velo South 100 miles. This year I will be continuing these types of events and continuing to push for more to help support this wonderful charity. 

Niemann-Pick Type C (NP-C) is a rare, life limiting, inherited neurodegenerative disease . It is caused by an accumulation of lipids (fats) in the liver, brain and spleen. The age of onset and rate of disease progression can vary greatly from person to person

Unfortunately this diesease is one that my aunty and cousins have got to know far to well. Both of my cousins Nat and Mel suffer with this very rare diesease. Here is a little about how their situation.  

Natalie began showing symptoms in her mid teens - falling for no reason, and struggling at school and college. After various incorrect diagnosis for other diseases, after 9 years we got the correct diagnosis at the age of 28. Melanie was symptom free until the age of 27 when she had a full psychotic attack without warning,  and was sectioned under the Mental Health Act for three months.

At present the disease has progressed to such an extent that Natalie now has dementia, is doubly incontinent, has no mobility. Her swallowing function  has stopped so she is nil by mouth and fed totally via a peg through her tummy. She has no muscle tone and is hoisted to move her. Her hearing is failing and she is epileptic. Natalie is now 35.

Melanie has underlying psychosis that has to be controlled, she also has to use a wheelchair because her mobility is poor and she falls regularly. She too has onset dementia. Her swallowing is starting to fail and She chokes on food and drink. She has uncontrollable myclonic and distonic movements throughout her body and has to be fed due to these movements. Her hearing is failing and her speech is very poor. She is extremely eroded cognitively and can no longer write.

One of my main aims for doing this is simply to raise awareness for this horrendous disease. Over time its become very apparent how few people know about it including (and through no fault of theirs but just purely down to the rarity of the disease) doctors and nurses.