Beckton hospice mum on looking after daughter with rare syndrome

Safa Haque who has Rett Syndrome (Image: Archant)

Shahanaz Haque’s seven-year-old daughter Safa lives with Rett Syndrome – a rare condition that affects the development of the brain – leaving her dependent on daily care.

The hard-working single parent was already mum to three children when Safa was born on September 10, 2007.

“I thought I had motherhood sussed out,” said Shahanaz. “But all that changed when Safa was diagnosed.

“Safa has no communication skills, which meant she would always be completely dependent on me for all her needs. I had to learn a whole new language without words.”

Shahanaz and her family are regular visitors to Richard House Children’s Hospice in Beckton after being referred there by a social worker shortly after the diagnosis.

These days Safa comes in for short stays at the hospice, giving Shahanaz some respite from the routine of daily care, while three of her four brothers and sisters attend the support group just for siblings under 20 years old.

“It was hard for Safa’s siblings initially as well,” said Shahanaz. “I was away so much with Safa’s appointments and assessments.

“It took a lot of understanding on their part but it’s second nature to them now and they look out for their little sister.”

The mum-of-five attends a support group at the hospice for mums of children whose lives are limited by health conditions, known as “Mums4mums”.

“I have good friends outside of the hospice, but it is really difficult for them to relate to my situation,” said Shahanaz.

“Everyone in the group is able to relate to each other’s difficulties and struggles. It’s a safe environment which allows you to have a good cry if you need to and there’s no judging.

“I think I would be lost without the mums group, it’s like a medicine for me and somewhere where I can de-stress.”

Speaking ahead of Mother’s Day, Shahanaz said one of her daughters had already done “something special” for her while her other children were planning a surprise.

“They are so excited about it,” she said. “I know it will be a wonderful day whatever happens though.”

Rett Syndrome is caused by a genetic mutation affecting one in every 10-12,000 women but is rarely seen in men.

There is no cure, with symptoms including impaired movement and communication. Most sufferers dependent on 24-hour care throughout their lives though many continue to live into middle age and beyond.

Visit richardhouse.org.uk for more information about the charity’s services.