The family of a girl with a rare autoimmune disease have been granted an exemption from quarantine at the hotel when she travels to the UK for treatment.
Roberta Wakeling, 11, developed pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, or Pandas, after a strep A infection two years ago, which went untreated.
The young Abu Dhabi resident has autism and is resistant to medication.
It is thought to develop when antibodies that fight strep infection adhere to a part of the brain called the basal ganglia.
We kept thinking that when the flights came back she might be stronger. But she is not stronger. She is weaker
This caused inflammation and resulted in behavior including obsessive-compulsive disorder and tics.
Other complications can include eating disorders. The onset is usually quick.
Roberta, a former student of the British school Al Khubairat (Bsak), where her father is a teacher, suffers from an extreme case of the disease.
Her symptoms developed very quickly after being diagnosed with strep and reached the point where she was completely bedridden and unable to lift her head.
Her mother Nicola, a teacher who worked at (Bsak), wants to bring Roberta back to the UK for treatment.
âI remember she was sick at the time of strep, but she recovered pretty quickly,â Ms. Wakeling said.
“However, she struggled to go back to school after that.”
Roberta began to suffer from extreme anxiety and obsessive-compulsive symptoms, Ms. Wakeling said.
The family knew there was something wrong, but assumed it was autistic arrest.
Roberta’s struggles lasted for months, but her condition improved in March of last year, just before schools closed for in-person learning after the onset 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 when she returned to the United Arab Emirates in December.
Her mother believes it was due to an outbreak of the disease, which occurs under autoimmune conditions.
“It happened very quickly and it shocked me,” said Ms Wakeling.
In March, Roberta appeared to be recovering, but collapsed and had to be hospitalized.
The hospital suggested it would be best to return to the UK for treatment.
Ms Wakeling organized an online consultation with a specialist in the UK, who said Roberta’s case was urgent and they should come back as soon as they could.
Roberta had doctors diagnosed with Pandas after a mother in an autism support group suggested she might have the disease.
Ms Wakeling found a specialist in Dubai and spent three hours with her going through Roberta’s medical history.
âShe said yes, she has it and it’s a clinical diagnosis, but she said she was still doing tests to understand her treatment,â Ms. Wakeling said.
Roberta’s struggles put a strain on the family and Ms. Wakeling personally.
She developed depression three months after her daughter’s symptoms first appeared.
But the mother of two came to terms with her condition, which helped her.
âI always said that acceptance was what got us through,â Ms. Wakeling said. “It was all I could do to help him. But once I accepted it, I adjusted.”
She said she was extremely grateful for the support the family received from the community.
They leave for the UK on Saturday.
Ms Wakeling said it was difficult to get an exemption from mandatory hotel quarantine in the UK and only intervened after seeking legal advice.
âWe needed support, not more battles,â she said.
The next challenge is to find a suitable place to treat Roberta.
“We are working hard enough to find a suitable hospital to treat her as pandas are not recognized in the UK,” Ms Wakeling said. “It’s really important that she goes to the right place.”