Ashfield gets behind fundraising for Sutton youngster Harvey Levy - one of only 21 people in world with chromosone deletion 10q26

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THE family of a young Sutton boy, who suffers from a rare disorder, say the community is getting behind a fundraising drive to enable him to enjoy all the things that other children often take for granted.

Five-year-old Harvey Levy is one of just 21 people in the world - and the only person in the UK - to suffer from chromosome deletion 10q26 which causes epilepsy, delayed development, speech delay and eating problems.

The condition develops in the early stages of pregnancy and occurs when some of the genetic information is missing from the chromosome.

But it was not until after he was born that mum Nyssa and dad Daniel found out that something was wrong.

Speaking from the family home on Frederick Street, Nyssa said: “We nearly lost him because he had bronchitis and pneumonia.

“He was in hospital for four weeks and we noticed that his head was quite flat and he had feeding issues.”

When he was five years old, Harvey had to have open heart surgery and is still being monitored at Leicester’s Glenfield Hospital because of a narrowing in the artery which takes blood away from his heart.

Despite everything he has gone through, Harvey is a content little boy.

“Nothing affects him,” said Nyssa.

“He’s just really happy.”

Little Harvey loves nothing more than playing in the garden with his older brother Joshua (10) and his three-year-old sister Ella-Louise but because of his condition, he becomes ill if he stays out in the sunshine for too long.

Now his family want to create an area in the garden where he can play safely out of the direct light.

Nyssa said: “When he was little we were told he would never walk so built wide paths so that we could take him out in his wheelchair.

“But now he is walking he can’t get out because it needs levelling.

“He loves digging but being in the sun makes him poorly - the heat exhausts him and makes him dehydrated.”

Harvey is also lucky enough to have a devoted brother and sister who help with the fundraising effort. “I like helping out with Harvey,” said Joshua.

Meanwhile, Harvey has already won the hearts of people in the district and a fundraising concert was recently held at the Ashfields pub in Sutton.

The family’s next fundraising event will take place at Blackwell Community Centre on 8th September from 11am until 6pm.

There will be a host of stalls, bouncy castle, refreshments, food, balloon modelling raffle prizes and much more. Many businesses in the area have donated prizes from free MOTS to baskets of fruit.

In the evening, there will be an ‘80s themed disco at Blackwell Miners’ Welfare.

The family have been helped by Ashfield charity Patches Heart Group as well as Unique which supports those who are affected by chromosome disorders.

In addition, Sutton resident Rob Bristol - who is well-known in the area for collecting Christmas and Easter presents for poorly children - has written a poem for Harvey which we have published here:

Eyes of a Child

Look into my silent eyes,

Please tell me what you see,

Chromosome deletion,

Has got a hold of me.

Beneath this cruel facade,

I wish to be like you,

Chasing dreams within my reach

Exploring pastures new.

Swimming with the dolphins,

Paddling in the sea,

Building castles in the sand,

Longing to be free.

I do not ask for pity,

Just a friendly smile,

Or to sit and talk to me,

For just a little while.

Should you accept my offer,

To spend sometime with me,

Would you find it easy,

Describing what you see?

By Rob Bristol