£10,000 gift of love in honour of Harley

Generous: Participants donned fancy dress to walk the 11-mile route taking in Sheffield's major football grounds.          Picture: Barry Richardson.
Generous: Participants donned fancy dress to walk the 11-mile route taking in Sheffield's major football grounds. Picture: Barry Richardson.

A SPONSORED walk organised in honour of a South Yorkshire schoolboy with a rare genetic disorder raised a whopping £10,000 towards medical research into the condition.

The 11-mile route took in Sheffield’s major football grounds, starting and finishing at the Owls’ ground in Hillsborough.

Rare disorder: Harley Ingham.

Rare disorder: Harley Ingham.

Participants donned fancy dress for the occasion, organised to raise money for the Cystinosis Foundation in honour of Harley Ingham from High Green.

The disease is characterised by an abnormal accumulation of the amino acid cystine, which in turn attacks the body’s organs.

Already little Harley is showing signs of the condition in his eyes, although thankfully sight tests show his vision has not yet been affected.

But his kidneys have not been so fortunate and examinations have shown they are not functioning properly.

This means the youngster is losing out on vital sodium, potassium and phosphates.

Healthy kidneys absorb minerals into the body, at the same time as getting rid of waste – but Harley’s damaged organs mean he simply gets rid of both the good and the bad.

The most obvious sign of Harley’s condition is his size. Although Harley is four and a pupil at High Green Primary School he is still small enough to fit in a pushchair which he has to use often because his legs tire so easily.

Much is still unknown about the condition and how it will affect him in the future, which is why his family and friends wanted to organise the charity walk.

The Cystinosis Foundation carries out research into the disease and potential treatments.

Organiser and family friend Mark Hewitt said he was thrilled with the success of the day. Although a final amount is still being totalled up, it looks like the event could have raised up to £10,000.

He said: “It went really well and we all had a great day. We look like collecting between £9,000 and £10,000 which is fantastic.”

Search www.justgiving.com for The Cystinosis Foundation or search Facebook for A Walk for the Cystinosis Foundation to sponsor them.