EMMA DUNN meets the mum of an exceptionally  courageous little chap who is up for a Pride of Swindon award... six-year-old Westlea Primary School pupil Morgan Sharpe

MORGAN Sharpe has overcome more in the last six years than most people will in a lifetime.

The brave six-year-old, who is a pupil at Westlea Primary School, was given just a five per cent chance of survival when he was born.

Morgan was born with a condition called Goldenhar syndrome, which means he was born with a missing ear, a missing eye for which he has a prosthetic replacement, butterfly vertebrae, fluid in the ventricles of his brain, and he needed a tracheotomy, which is a permanent incision in his windpipe to keep it open, His parents first found out something was wrong with Morgan during pregnancy at his 20 week scan, which showed he had large ventricles in his brain.

Further scans showed he had increasing levels of fluid in his brain, which meant there was an increasing chance that Morgan would be severely brain damaged, but there was no indication that Morgan would look different to other children.

Morgan’s mum, Kerry Holmes, of West Swindon, said: “I had a difficult birth and there were a lot of doctors around me because they knew he was going to have problems. When he was born I heard Morgan’s dad say ‘why is his ear so little?’ “Then they put Morgan on my chest and as I looked down at him I saw he only had one eye. At first, the doctors said ‘no he’s got both’, but I said ‘no he’s definitely got one’.

“I expected something to be mentally wrong with him but not physically. I didn’t expect it to show on the outside when I looked at him.

“My mum and dad showed up just as I gave birth but nobody else saw him for a few days. I needed to get it straight in my head.

“You don’t expect to have a baby with one eye and one ear. I fell in love with him straight away anyway. It was just the worry of if he was going to survive.”

Morgan was diagnosed with Goldenhar Syndrome, which affects just 75 children in the UK.

Goldenhar Syndrome, which does not affect intelligence or lifespan, is an umbrella term for a wide range of bone abnormalities affecting the face and sometimes the vertebrae. It has been proven not to be genetic.

“We had never heard of Goldenhar Syndrome when we were told Morgan had it, nobody had,” said Kerry, who is now 29.

“Because we had never heard of it we didn’t know how it would affect him, but as he is getting older they are developing more things that they can do to help him, so by the time he has finished growing I imagine they will have come up with lots of procedures.”

Morgan spent the first two weeks of his life at Great Western Hospital, and when he eventually went home for the first time he turned blue on a shopping trip and had to return to hospital.

He was put on an oxygen tank due to bronchiolitis, but then suffered a respiratory arrest.

He was transferred to Oxford, where he was put on life support and given just a three per cent chance of survival. Doctors discovered Morgan had a twisted windpipe, and a tracheotomy increased his chances to five per cent.

The long process of corrective operations began shortly afterwards at GWH.

Since then, Morgan has had numerous operations and procedures, but despite this he still has a huge personality, boundless energy and an infectious smile.

He is now in Year 2 at Westlea Primary School and loves all things to do with magic, particularly witches and wizards, and also enjoys playing musical instruments in his family’s music shop, Holmes Music, in Faringdon Road.

Kerry was determined for Morgan to attend mainstream school because mentally he is like any other child his age.

“Morgan is amazing. Every specialist I have seen has always said to me he is amazing,” said the mother-of-two.

“They never would have thought he would come out of everything the way he is today. They say when they saw that tiny little baby with a five per cent chance of life and they see him running around now they can’t believe it.

“I am really proud. He is an amazing little boy. He won’t let anyone stop him wanting to do whatever he wants. He hates to be different. He’s not allowed to swim with his school because of his tracheotomy and he hates it. I take him swimming and he loves the water.

“Now he’s getting bigger he’s starting to notice he’s different. He said to me ‘when I have kids I’m not going to tell them I have Goldenhar because I’m embarrassed’.

“I said to him ‘I am so proud of you and don’t ever feel you should be ashamed of having Goldenhar’.

“Hearing him say things like that is hard.”

Morgan, who wants to be a wizard when he grows up, said he loves being a big brother to his sister Sienna, who is two.

His granddad, Alan Holmes, has raised £50,000 for Goldenhar Family Support Group, which provides information and support services for families who have children with Goldenhar Syndrome.

Morgan sang at a charity show in aid of the Goldenhar Family Support Group and Swindon Ten to Eighteen Project in December, and plans to do the same again this year.

Further information on the charity and the syndrome can be found at www.goldenhar.org.uk.

 

<li>MORGAN has been nominated for a Pride of Swindon Award.
<li>It is now the sixth year that the Pride of Swindon Awards have taken place. They recognise the children and adults in the town who have gone above and beyond to support their local communities.
lThere is still time to get your entries in. Nominations end on February 3.
<li>To nominate someone who has made a difference to your community for the Pride of Swindon Awards, follow this link to the nomination form: http:www.swindon. gov.uk or www.swindonadvertiser.co.uk. Forms will also be available in libraries throughout the town, or from the Mayor’s Office.
<li>Post your nomination to: The Pride Of Swindon Awards, Mayor’s Office, Civic Offices, Euclid Street, Swindon SN1 2JH or email prideofswindonawards@swindon.gov.uk.