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Mum’s drive to change views on cerebral palsy

'STRONG LITTLE BOY' ... Tracey Horner with her 10-month-old son Toby, who has cerebral palsy.

'STRONG LITTLE BOY' ... Tracey Horner with her 10-month-old son Toby, who has cerebral palsy.

A DEVOTED mother is hoping to raise awareness of cerebral palsy after her baby boy was diagnosed with the condition.

Tracey Horner had a textbook pregnancy, but son Toby was starved of oxygen at birth and spent 28 days in special care before he was allowed to go home.

When he was five months old, he was diagnosed with bilateral spastic cerebral palsy.

Mrs Horner has set up a Facebook page, Team Toby, to raise awareness of cerebral palsy and update people on her little boy’s progress.

She was inspired to share her story after finding it hard to find someone who knew exactly what she and her husband were going through when Toby was diagnosed.

“We felt very isolated when it happened and very lonely. We didn’t understand why it had to happen to us,” she said.

“We couldn’t find anyone that had had the same experience. I am not aware of any groups that exist specifically in South Tyneside just for support.”

The page is also aimed at challenging people’s views of disability by showing the strong, happy little boy that Toby is.

Mrs Horner said: “The hope is that society will not pity him or feel sorry for him, but respect him and encourage him and also accept him, so he can live his life and be happy.

“Our main aim as parents is for him to have a normal, happy life. We don’t want people staring at him in the street wondering what’s wrong with him and feeling sorry for him. He’s our beautiful child.”

Mrs Horner, 29, of Shakespeare Avenue, Hebburn, said: “He had an MRI scan when he was 10 days old, which found brain damage, so it wasn’t a complete shock.

“We had been warned beforehand that it was likely to happen and it would affect all four of his limbs, although we didn’t accept it then.”

Toby, who is now 10 months old, arrived nine days late on New Year’s Eve last year, at the Newcastle Birthing Centre.

Mrs Horner, a pharmacy technician at the Freeman Hospital in Newcastle, said: “I had a very low-risk pregnancy, with no complications at all, and a pretty straightforward delivery until the end.”

Toby was unresponsive when he was born and had to be resuscitated.

Mrs Horner, who is married to Adam, 29, an information officer for the youth offending team at Gateshead Council, managed to grab his finger to touch him before he was taken to the special care baby unit.

He suffered several seizures and was diagnosed with hypoxic ischemic encephalopathy (HIE), a potentially fatal condition in which the brain is deprived of oxygen, which resulted in moderate brain damage.

Mrs Horner said: “They gave him some medicine to stop the seizures, but he stopped breathing a few times in special care.”

Toby was also born without a gag reflex, so he had to be fed via a tube until it developed when he was three weeks old.

“When he started feeding from a bottle, that was a really good day,” said Mrs Horner.

The tot, who also spent some time at the Queen Elizabeth II Hospital in Gateshead, still has some minor feeding issues and has to have thickened milk.

His development is also slightly delayed and he’s not yet rolling over or sitting up, but his hearing and intelligence have not been affected.

Toby sees a lot of specialists and receives physical and speech therapy. He enjoys swimming and does physiotherapy exercises every day at home.

Mrs Horner added: “He’s a little bit too young to go into a more specific diagnosis because they change so much as they are growing up. We’re hoping that as he gets older, his symptoms will get less and less.

“What is currently four limbs affected may progress to two, but at the moment it is likely it will remain four because he’s still very clumsy with his hands.”

For more information, visit www.facebook.com/teamtoby2012

Twitter: @shieldsgazedu

 

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