Pipers PKU walk
About the group
Fund raising for NSPKU
Our fundraising page.
Fundraising for NSPKU
On the 4th August we are going to be taking part in the Yorkshire Dales 3 Peaks challange to raise awareness & money for a cause close to my heart.The Yorkshire 3 peaks challenge involves climbing Pen-y-Ghent, Whernside and Ingleborough peaks in the Yorkshire Dales National Park. We will attempt to complete the 24 miles of walking and 1500m of ascent within 12 hours.
All funds will go directly to the NSPKU and Prader willi sydrome association, we are hoping to raise at least £600. For those who are not aware our daughter was diagnosed with a rare genetic disorder called Phenylketonuria (PKU) which means she cannot digest a substance in food called phenylalanine which is found in protein. If untreated, PKU can lead to intellectual disability, seizures, behavioural problems, and irreversable mental disorders. She will have to follow a very strict & specialised diet in order to lead any kind of healthy life. Which means high protein food such as meat, fish, poultry, cheese, eggs and milk are not permitted. Instead the diet is a supplemented with artificial protein which contains no phenylalanine. Piper has to have her bloods taken every week to monitor the phenylalanine levels and to make sure they are kept in a safe range. This rare genetic disorder was detected by having the newborn screening test at 5 days old, it affects 1 in 10,000 babies.
The NSPKU exists to help and support people with PKU and their families. As well as sponsoring medical research in PKU , the NSPKU fund the testing of food for phenylalanine content,it cost approx £220 to test just one food!
Not only are we doing this challange for our daughter Piper but we are also wanting to raise money for another charity called prader willi syndrome for my close friends & business partner Gabi & Liam. Their daughter Liliana was also born with a rare genetic disorder, Prader willi syndrome. They will also be joining us on the 3 peak challange to raise money for both charities.
Homepage of NSPKU .
Challenge registration number:
This challenge took place on Sunday, 4 August, 2019.
Time completed: 14 hours 35 minutes.
Yorkshire Three Peaks Challenge
The Yorkshire Peaks Challenge involves climbing Pen-y-ghent, Ingleborough and Whernside, often within 12 hours.