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“Our Saffa died the way she would have wanted”: Girl loses battle to rare form of Batten disease

Saffa Shehzan (centre) with dad Majid and brother Isa, seven.
Saffa Shehzan (centre) with dad Majid and brother Isa, seven.

The family of a young girl who bravely battled a rare illness say she died ‘the way she would have wanted’.

Five-year-old Saffa Shehzan spent her final hours surrounded by loved ones at her St Annes home before she died on August 1.

Today her parents paid tribute to an “outgoing, cheeky, lovely” girl.

Last year, she was diagnosed with a rare form of Batten disease that took away her ability to walk and eat.

READ MORE: What is Batten disease?

And in recent months, as her family tried to get a drug that could potentially have extended her life approved in the UK, Saffa was put on a palliative care plan as her condition worsened.

By the time she died, the youngster had been robbed of all her senses except one – her hearing.

Her mum, Saima, 36, said: “The last few days, everybody got a chance to say goodbye in their own way. All her family was around.

“She could hear – she would have been aware of it.

“It worked out the way she would have wanted.”

Just hours before Saffa died, at around 6.30pm, she was visited by teachers from Pear Tree School, in Kirkham, who gave her musical therapy.

“School is out but everybody made an effort,” Saima added. “We appreciate it so much.”

READ MORE: St Annes family’s fight to get new drug Brineura approved

And after hundreds of people turned up to her funeral in Briarfield, with just a day’s notice, her parents have thanked all those who turned up.

Saima added: “Saffa was really bubbly – she had the most beautiful smile.

“She was independent and feisty. She knew what she wanted.

“There was something about her that everybody loved, that attracted so many people.”

Saffa, who lived with her parents and her seven-year-old brother Isa at the Clifton Drive North home, suffered from a rare life-limiting condition called CLN2, a form of Batten disease that affects around six children a year in the UK.

Saffa’s dad Majid, 36, said: “It’s sad to see her go but there’s relief as well because it’s a horrible condition.

“She’s in a pain-free place now. She’s a free soul.”

As well as praising the “amazing” turnout at their daughter’s funeral, Saffa’s parents also spoke of their gratitude to those, including medics and teachers , who went “above and beyond” to help their little girl.

They reserved particular praise for staff at Pear Tree School, Brain House Children’s Hospice and Saffa’s paediatric consultant Dr Nigel Laycock.

“They fought for Saffa,” said Saima. “We couldn’t have asked for better people.

“She was lucky to have them in her life. It just showed us she was loved by a lot of people.

“They were her family. They meant a lot to her as well, not just us.

“They gave her memories and made what she had left of her life beautiful.”