'Our whole life turned upside down': Parents of Wellingborough girl, three, help raise awareness of daughter's little-known rare disorder

The Bakrania family
The Bakrania family

Agna and Raj Bakrania's daughter Nyra is a happy and energetic three-year-old girl; she is always smiling, laughing and loves nothing more than to be cuddled.

In many ways, she is just like any other child her age, except Nyra suffers from a rare neuro-genetic disorder - Angelman syndrome - that occurs in one in 15,000 children.

Nyra

Nyra

Characteristics and symptoms of Angelman syndrome include developmental delay, lack of speech, seizures, and walking and balance disorders. Those diagnosed will require life-long care.

It can sometimes be misdiagnosed as cerebral palsy or autism due to a lack of understanding of the condition and the Bakranias, of Wellingborough, hope to raise awareness ahead of International Angelman Day on Friday (February 15).

"At about eight or nine months she wasn't reaching milestones so we thought there might be something wrong," said 42-year-old Agna.

"The doctor said 'let's see how it goes' while a care worker kept an eye on things.

"By about 12, 16 months we were getting more and more concerned because she wasn't babbling or sitting up.

"We did a lot of research and went to the doctor's armed with questions."

After speaking with their doctor, Agna and her husband Raj, 44, were offered a genetic test and the results revealed Nyra had Angelman syndrome.

"Our whole life turned upside down," said Agna.

"In the first instance, we hadn't heard of it.

"We gave ourselves some time to grieve over it but at the same time we said 'Nyra needs help'."

The family had to make adjustments with Agna becoming her daughter's carer full-time while alterations were made to their Ashton Grove home to make it more suitable for Nyra.

At the moment, Nyra is being taught non-verbal communication because due to her condition she is unlikely to ever be able to speak.

Nyra's brothers Dhruv, 9, and seven-year-old Sai also help in any way they can.

Dhruv approached his headteacher at Redwell Primary in Wellingborough and was granted permission to hold a cake sale and talk about his sister and her condition in school assembly.

Busy Bees Nursery in Wollaston, where Nyra goes, agreed to hold a coffee morning to raise awareness of the condition.

"Although it’s taken time to accept and adjust to Nyra’s condition, we have as a family decided to live and embrace life," said Agna.

"Coping with Nyra’s condition is very hard work but we feel blessed to be able to care for such a special and beautiful girl."