Toddler to run 1km for genetics charity that helped make his life possible

Theo Sakol, who is just 18-months-old, will go the distance to raise money for Jewish screening charity Jnetics

A third-time-lucky toddler from north London is to run one kilometre to raise £1,000 for the Jewish genetics charity that helped make him possible.

Theo Sakol, now aged 18 months, was born to Gary and Bianca Sakol in December 2016, after the couple had been forced into two earlier terminations.

A chance encounter with a director of screening charity Jnetics while Bianca was pregnant in early 2015 led to the couple being tested, expecting nothing untoward, only to find out that they were both carriers of Canavan disease.

A disorder affecting one in 50 Ashkenazi Jews, Canavan disease is a life-shortening progressive illness of the central nervous system, and to their horror, the couple soon found out that they had passed it to the child Bianca was carrying. There is a one-of-four chance of carrier couples doing so.

The Sakols opted for a termination, in August 2015, and got pregnant again soon after, but yet again, the unborn baby was confirmed as having Canavan disease, which develops in early infancy and leads to the “progressive neurological deterioration of a child’s physical and mental capabilities”.

“We decided to go for a third, thinking we’d probably have IVF if it happened again, because there’s only so many times you can go through something like that,” said Bianca this week, as she sought to help Theo raise money.

“Thankfully it was third-time-lucky and Theo was born healthy – thank God – on 23 December 2016, a year and a day since my second termination.”

She said their participation was a “thank you” to Jnetics, whose director – Katrina Sarig – had pestered the couple to get screened three years ago.

“There’s not a day goes by that we’re not thankful she did,” says Bianca. “Had she not done so, not only would our child have died, but they’d have suffered terribly every day. We owe Jnetics so much.”

At 18 months old, she says Theo “may not run all it, I imagine he’ll end up being carried for the last bit,” adding that he’s raised £220 of his £1,000 target so far.

After the fun run this Sunday, Bianca says she wants to start a support group for carrier couples with a friend of hers who had similar difficultiefs. “She discovered that she and her husband were both carriers of Tay-Sachs Disease. “It’s a unique experience and it can be very lonely, so it’s something we may be able to help with.”