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PIPER PKU STRONG

3 team members

Total raised so far £0.00

Target £0.00

Total plus Gift Aid: £0.00

Raised offline: £0.00

Team story

[p]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. All funds will go directly to the NSPKU and 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 heal pric test at 5 days old, it affects 1 in 10,000 babies.[/p][p]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![/p][p]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 our friend 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.[/p][p]Here is a little bit about their story below.[/p][p]November 2017 Liliana was born she but didn’t have the best start to life , we spent the first 4 weeks in hospital with her in intensive care. Then in January 2018 our life’s changed forever when we got the devastating diagnosis for our daughter Liliana, she was born with Prader Willi Syndrome - a rare genetic disorder that effects 1 in 15,000 people. The syndrome affects many things but most of all she will never have the feeling of been full so she will constantly be hungry which means she has to have a very healthy strict diet and will need constant supervision.[/p][p]Please help us raise awareness and raise some money for a good cause even if its just £1!![/p]
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Share their story

Supporters

May 1, 2019

Jessica Sims

❤❤❤

£10.00 plus £2.50 Gift Aid

May 1, 2019

Charlotte neil

Everyone deserves to live without the fear that what they eat may endanger their health. Please donate even if it’s just £1 every little helps

£15.00

Apr 26, 2019

Anonymous

£10.00 plus £2.50 Gift Aid

Apr 26, 2019

Sarah

Good luck XX

£15.00 plus £3.75 Gift Aid

Apr 19, 2019

Cathy McVeigh

Good luck with the walk!

Apr 18, 2019

Darby

Good luck dude from me lisa and mollie 😘

£20.00 plus £5.00 Gift Aid

Apr 17, 2019

Jane Stewart

Good luck with the challenge and raising awareness and funds and looking after your little girl xxx

£10.00 plus £2.50 Gift Aid

Apr 17, 2019

Bronnie

Apr 17, 2019

Nicole

£5.00

Apr 17, 2019

Lee, Alison, Jasmine and Daisy Green xxxx

Well done! Such a worthy cause and to raise awareness is always a positive step for people with PKU. So close to our families hearts too! Piper will be very proud of her Daddy, love The Green Family ❤xxx

£20.00 plus £5.00 Gift Aid

Daniel Gill

Daniel Gill

Debbie Neil

Debbie Neil

Kari-Ann Gill

Kari-Ann Gill