Family of girl with rare autoimmune disorder given exemption from UK quarantine

Roberta Wakeling, 11, suffers from Pandas, leaving her bed-bound

The Wakeling family, who live in Abu Dhabi, have been desperately trying to avoid hotel quarantine in the UK when they travel there for Roberta's medical treatment. All photos courtesy of Nicola Wakeling

Roberta Wakeling in hospital. She suffers from a rare autoimmune neuropsychiatric disorder knows as Pandas

11 year-old Roberta is also autistic, which makes her resistant to medication. Her refusal to take antibiotics led to the development of Pandas

Roberta's hair became matted in 2019 because she could not tolerate having it brushed

Roberta, a former pupil at Abu Dhabi's British School Al Khubairat, with her cat Whistley

The family of a girl who has a rare autoimmune disorder have been granted an exemption from hotel quarantine when they travel to the UK to seek treatment for her.

Roberta Wakeling, 11, developed paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, or Pandas, after a strep A infection two years ago, which was not treated.

The young Abu Dhabi resident is autistic and resists medication.

It is believed to develop when antibodies battling streptococcal infection stick to a part of the brain called the basal ganglia.

This caused inflammation and results in behaviour including obsessive compulsive disorder and tics.

Other complications can include eating disorders. The onset is typically rapid.

Roberta, a former pupil of the British School Al Khubairat (Bsak), where her father is a teacher, suffers from an extreme case of the disorder.

Her symptoms developed very quickly after strep was diagnosed and reached the point where she is completely bed-bound and unable to lift her head.

Her mother Nicola, a teacher who used to work at (Bsak), wants to get Roberta back to the UK for treatment.

“I remember she was sick at the time of the strep but she got over it quite quickly," Ms Wakeling said.

"However, she struggled to go back to school after that."

Roberta began to suffer extreme anxiety and obsessive compulsive symptoms, Ms Wakeling said.

The family knew there was something wrong but presumed it was an autistic shutdown.

Roberta's struggles went on for months but her condition had improved by March last year, just before schools closed for in-person learning after the start of the coronavirus pandemic.

In November, she returned to the UK to spend time with her family and was doing well, but her condition deteriorated on her return to the UAE in December.

Her mother thinks it was due to a flare-up of the disorder, which happens in autoimmune conditions.

“It happened very quickly and it shocked me,” Ms Wakeling said.

In March, Roberta appeared to be recovering but she collapsed and needed hospital treatment.

The hospital suggested it would be better to return to the UK for treatment.

Ms Wakeling arranged for an online consultation with a specialist in the UK, who said Roberta's case was urgent and they should return as soon as they could.

Roberta had Pandas diagnosed by doctors after a mother on an autism support group suggested she could be suffering from the condition.

Ms Wakeling found a specialist in Dubai and spent three hours with her going through Roberta's medical history.

“She said yes she has it and it’s a clinical diagnosis, but she said she is still doing tests to figure out her treatment,” Ms Wakeling said.

Roberta’s struggles have placed great strain on the family and Ms Wakeling personally.

She suffered a breakdown three months after her daughter's symptoms developed.

But the mother of two came to accept her condition, which has helped.

“I have always said the acceptance is what got us through," Ms Wakeling said. "It was anything I could do to help her. But once I had accepted it, I adapted."

She said she was extremely grateful for the support the family have received from the community.

They leave on Saturday for the UK.

Ms Wakeling said obtaining an exemption from the UK's mandatory hotel quarantine was difficult and only came after they sought legal advice.

"We needed support, not more battles," she said.

The next challenge is to find a suitable place to treat Roberta.

"We are working quite hard to find an appropriate hospital to treat her, because Pandas isn’t recognised in the UK," Ms Wakeling said. "It’s really important she goes to the right place."