Callum’s parents vow to “make memories” after being told Hartlepool boy may not have long to live

Callum Smith in his light room with his dad Luke and mum Zoe Neesam. Picture by FRANK REID
Callum Smith in his light room with his dad Luke and mum Zoe Neesam. Picture by FRANK REID

THE devoted parents of brave Callum Smith have been told to “make memories” of their little boy after medics broke the devastating news he may not have long to live.

Zoe Neesam and Luke Smith are desperately hoping their beloved two-year-old will continue to defy the odds, but have had to accept they must treasure each day with him.

Today, Zoe, 21, said: “We will shower Callum with love every day and fill his life with fun for however long he has.”

Doctors have carried out an MRI scan which showed Callum has a condition called progressive cortical and brainstem atrophy. It is causing his brain to shrink and means he will eventually lose brain cells.

But Zoe and Luke, 23, hope Callum can keep on proving to be a little fighter, just like he has done throughout his life.

Zoe told the Mail: “We have both agreed that we are going to be happy. We don’t want Callum thinking ‘why are my mummy and daddy always crying’.

“We want him to have fun. That is what life is all about.”

In a whirlwind few weeks before Christmas, the couple from Laird Road in Hartlepool were told Callum’s brain was shrinking.

Zoe said: “It was the worst news ever for us to hear because this means, as his brain shrinks, he will lose brain cells which means he will deteriorate.”

In another development, doctors also told the couple there was only so much they could do for Callum’s breathing and did not want him to be resuscitated if he suffered from breathing problems again. He spent his second birthday on a life support machine in hospital last year.

He also has many other conditions including seizures, movement disorder, constant collapsing of the right lung, dysfunctional upper airway and dysrhythmic breathing and sleep disorder.

He is also on an oxygen almost all day and has a bipap ventilator overnight.

Yet part of Callum’s condition is still undiagnosed. He is thought to have pontocerebellar hypoplasia, which is the broad term for a string of conditions that affect the development of the brain.

There are six types with a variation of lifespan from infancy to adulthood.

Zoe, who is Callum’s full-time carer, said: “We have been told to make memories with Callum at home, so he is now going to be treated at home when he is poorly and have the doctors come to the house to treat him.

“We are planning to raise money to be able to take Callum away on holidays to Disneyland and possibly Lapland as he loves Santa.”

In the meantime, said Zoe, Callum was continuing to “smile through it all”.

And the newly completed sensory room, paid for by Hartlepool Mail readers in our Callum’s Dream appeal, was making a huge difference to his life. She said her son, who could not lift his head before, could now “turn his head to mid-line to look at the lights on the ceiling.

He can also indicate that he loves his mummy, and can point to his hair.

They are all signs that Callum is developing, said Zoe, who believes Callum is in the right place.

“I would rather he is at home with his beloved telly on, or in his sensory room. Anything to make him happy.”

Zoe has already begun compiling a treasured online diary of her son, called Callum Smith’s journey. Two hundred people have already liked it.

“There are some I don’t even know,” said Zoe who added: “I update it every day to show him how loved he is.”