Leeds' toddler Connie Annakin set for pioneering Batten disease treatment to extend her life

With a shy smile that has captured a thousand hearts, Leeds' toddler Connie Annakin is oblivious to the whirlwind that surrounds her.

Saturday, 5th October 2019, 06:00 am
Updated Monday, 7th October 2019, 10:19 am

Now, with the determination of Great Ormond Street doctors and the blessing of Pope Francis' prayers, it seems the world is smiling with her as she readies to begin.

"The Pope's prayers have been answered," says mother Caroline Day, revealing that she had received a letter from the Vatican just as a decision was reached.

Caroline Day, of Farsley, Leeds, is mum to three-year-old Connie Annakin, who was born with a rare condition Batten Disease. Image: James Hardisty

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"She's been given a life back. That constant gloom, that was hanging over us every waking moment, has gone.

"Connie is going to get the treatment. It's going to change our lives completely, because now it means she has got a future."

Rare genetic condition

Connie, aged three and from Farsley, was diagnosed with rare Batten disease in June, after her speech regressed and she started to suffer seizures.

Leeds' Connie Annakin, aged three, who has rare Batten disease, is to receive life-changing treatment after a campaign was won to secure funding on the NHS. Picture: James Hardisty.

With the cruel condition, she would have been robbed of her ability to walk and talk, developing dementia before dying as young as six.

Now, there is a notable change in Miss Day as we meet, with the weight of the world lifted from her shoulders. Radiant, she beams with joy even as she answers the door.

Speaking to the YEP this summer, she had spoken tearfully of the family's plea for a new treatment, deemed too expensive for the NHS by advisory body NICE.

While the enzyme replacement therapy, from Biomarin, could never cure Connie, it could give her a quality of life for an additional 30 years.

Three-year-old Connie Annakin, who has rare genetic condition Batten disease, with mother Caroline Day at home in Farsley, Leeds. The family have spoken of their relief as the NHS agrees to treat Connie with new enzyme replacement therapy. Image: James Hardisty

Plea to the Pope

In desperation, she had written to the Vatican, receiving a letter from the Pope to promise he would pray for Connie, enclosing rosary beads he had personally blessed.

It landed as the family were abroad, on what they feared would be Connie's last holiday. That same week, an agreement was reached over the cost of her and other children's care.

And while the finer details of the access agreement are still being put to paper, Connie has already met with senior doctors at Great Ormond Street Hospital as they fight to help.

Connie Annakin, from Leeds, is to travel to Great Ormond Street Hospital for enzyme replacement therapy which could grant her an additional 30 years' quality of life as she battles rare Batten disease. Image: James Hardisty.

With all preparations in place, the hope is that as soon as the final 't' is crossed on the paperwork, her treatment can begin immediately, stopping the disease in its tracks.

Family's delight

"This is better than winning the lottery," says Miss Day. "We are so elated.

"When we were fighting for treatment, I was grieving for her while she still lived. Trying to cram into two years a lifetime's worth of lovely experiences and memories.

"Now, all the things that we take for granted, like school plays, sleepovers with friends, she will get. We didn't think she would, without the treatment.

"We've all been fighting so hard for this. There are no words to describe how absolutely grateful I am."