Chapel-en-le-Frith grandad on fundraising mission

Molly, grandad Will and Ellie who has Cystinosis
Molly, grandad Will and Ellie who has Cystinosis

A Chapel-en-le-Frith grandad wants to raise money and awareness for a rare disease which affects 150 people in the UK - including his granddaughter.

Will Newman is planning a hair makeover next month and will have Ellie, his 16-month-old grandchild’s name, shaved into his hair to get people talking about Cystinosis.

He said: “Everyday she is in my head and in my thoughts - now she can be on my head too. I just hope the money I raise will go to finding a cure for this horrible diagnosis.”

Cystinosis is a very rare genetic disease that affects approximately 150 people in the UK and about 2,000 people worldwide. It causes the amino acid ‘cystine’ to accumulate in the body’s cells.

Over time this destroys various organs including the kidneys, liver, muscles, white blood cells, eyes and central nervous system.

Will, of Buxton Road, wanted to do something to show Ellie how much she is loved.

He said: “Ellie is a twin, but luckily Molly doesn’t have it.

“The condition is so rare that even medical professionals don’t really know what to do to help her. There are drugs available which slow down the crystallisation of her kidneys but nothing will stop it and it’s horrible to think how much pain she might be in.”

He describes his granddaughter, who lives in Reading, as being full of life and with a wonderful smile.

Will wanted to raise £450 for Cystinosis Foundation UK - equating to £3 for every person in the UK with Cystinosis - however he has already raised nearly £1,000.

The big shave will take place on Friday December 9 at Richard Martin Hairdressers in Chapel. To sponsor Will, visit https://www.justgiving.com/fundraising/Will-Newman3.