DAVID Cameron has revealed the emotional “torture” of watching his “darling” son die from a rare neurological disorder at just six-years-old.
The former Prime Minister opened up about his firstborn son Ivan’s devastating death – saying it felt “as if the world had stopped turning”.
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In extracts of his memoir For the Record, serialised in the Sunday Times, the ex-Conservative leader candidly wrote about how his life had “always gone right” until his baby boy’s diagnosis.
Born on April 8, 2002, Ivan had initially seemed a healthy baby boy – until he started to lose weight, appearing to have regular seizures at just two-weeks-old.
And although he was ultimately diagnosed with the extremely rare Ohtahara syndrome, the name did nothing to provide his family with any comfort – with no treatment or cure, or known cause.
Instead, Cameron and his wife Samantha were forced to watch as their baby boy suffered between 20 to 30 seizures a day, leaving his clothes “drenched in sweat and his poor little body exhausted”.
Ivan was unable to move his limbs or speak, and his only self-conscious movements were to smile and raise his eyebrows.
In the candid piece, Cameron wrote: “A world in which things had always gone right for me suddenly gave me an immense shock and challenge.”
While doctors desperately offered treatments, Cameron said his little boy could barely keep down the medicines during the dark times he could “hardly bear to remember”.
Cameron revealed that he and Samantha even underwent “genetic counselling” to find out what the risk was of Ivan’s condition recurring for any of their future children.
What is Ohtahara syndrome?
Ohtahara syndrome is rare epileptic condition where seizures typically start before three months of age.
It affects around one in 500 epileptic sufferers and is caused by an underlying structural brain abnormality.
This can be caused by brain damage before and around the time of birth, or it can be passed on in the genes.
The seizures are often resistant to medicine, and babies will often have little developmental progress.
Many sufferers die before the age of two from complications such as repeated chest infections.
Those who survive are typically severely disabled and will experience continued seizures even with treatment.
Told they had a 20-1 chance, they went on to have three more children – Nancy, 15, Arthur, 13, and Florence, nine.
Little Ivan died from massive organ failure in February 2009, aged just six.
Cameron said: “Nothing, absolutely nothing, can prepare you for the reality of losing your darling boy this way.”
The former politician, who abandoned Tory party conferences twice to be by his son’s side in hospital, said he loved his son with all his heart.
But he paid tribute to his wife Samantha, saying: “While I think of ways in which I failed, I cannot think of a single way Samantha did.
“I still marvel when I think of how she managed and cared and loved and coped, not just with Ivan but with the rest of our growing family.”
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