Ill Hartlepool boy’s case is one of only 11 in the world

Callum Smith in his light room. Picture by FRANK REID
Callum Smith in his light room. Picture by FRANK REID
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A brave little boy– who captured the hearts of Hartlepool Mail readers before his tragic death aged three – was suffering from one of the rarest conditions in the world.

Only ten other people in history have been diagnosed with the gene mutation – which is so uncommon it has yet to be given a proper name.

When I got the letter, I could not stop crying. It is nice to know that he is going to help other chilren, to know that parents are going to find out straight away instead of having to wait for years. He will go down in history

Zoe Neesam

But news that Hartlepool youngster Callum Smith had the condition has just been confirmed by experts. It brought a huge array of emotions for Callum’s mum Zoe Neesam but an overriding one was pride that her son’s diagnosis could help other children across the globe.

Today, Zoe said: “When I got the letter, I could not stop crying.”

But they were partly tears of happiness and Zoe explained: “It is nice to 
know that he is going to help other chilren, to know that parents are going to find out straight away instead of having to wait for years.

“He will go down in history.”

The problem lay with the GNA01 gene which had mutated and was affecting the chemical signals to Callum’s brain.

Zoe admitted: “It does feel like a step forward but I still have lots of questions.”

Callum underwent tests as part of a study since 2013. Scientists kept revisiting the study as technology advanced and eventually made a breakthrough.

But it is still early days in taking in all of the information for Zoe, who admitted: “I have not got my head round it yet.”

Zoe is expecting to have a meeting with a geneticist to find out more on the new development. By chance, it will be held on the first anniversary of Callum’s death. Zoe added: “There have only been ten other cases in the world and Callum is number 11. He will help diagnose other children.”

Tragic Callum passed away in February last year after fighting against a string of conditions including epilepsy, dystonia and hypertonia. He was taken to the hearts of the people of Hartlepool when we launched the Callum’s Dream appeal, in conjunction with town charity Epilepsy Outlook, in the summer of 2013.

We asked our readers to help raise £5,000 so Callum could have a sensory room at his home.

The campaign eventually totalled around £14,000, much to the delight of Callum’s parents, Zoe and Luke Smith, 24.