Mum who lost daughter to cruel disease on Mother’s Day praises CHAS

Sabeel Hussain was born Pompe disease, a rare condition which causes muscle weakness, difficulty breathing and also severe organ damage.

Sabeel’s mum Saiqa lost her first-born son to the disease when he was only five months old so was heartbroken when she found out her baby girl also had the cruel condition.

The brave mum is sharing her story as part of a campaign being run by Children’s Hospices Across Scotland (CHAS).

Saiqa said: “When Sabeel was born in 2012, she was the girl I had always dreamt of. I was the only girl in my family so I had always desperately wanted a wee daughter.

“I didn’t believe the doctor when he told me Sabeel had Pompe disease because she was feeding well but then he showed me her x-rays and told me her heart was badly affected and that she was on the verge of heart failure.

"I was absolutely devastated.”

The family were referred to CHAS when Sabeel was three years old and started visiting Robin House, enjoying time together as well taking part in days out.

Staff gave Sabeel the vital medical care she needed and put on her favourite arts and crafts activities, calling her the ‘glitter queen’ as she left a trail of glitter wherever she went.

Saiqa, from Glasgow, explained: “The hospice was not only a lifeline for Sabeel but also for her brothers, Faraz and Ali. They helped my boys too in such an amazing way.

“They gave them confidence and supported them through the highs and the lows.”

Sabeel continued to visit Robin House for many years but as she got older, her condition worsened.

The hospice extended the family’s stay to three nights every month.

But in 2020, Sabeel deteriorated and just as the country went into lockdown, the family came to Robin House one last time.

Sabeel passed away in the hospice on Mother’s Day 2020, aged 17.

“The last few hours of Sabeel’s life were filled with love,” Saiqa said. “I sat quietly by my daughter’s bedside, whispering words of comfort. I needed her to know I was there, holding her close, just like when she was a cuddly baby.

“The staff were like angels without wings. They showed me so much love and care and helped me to process Sabeel’s death. They also helped me with the practical things like contacting the mosque and planning the funeral – things that I was in no fit state to think about on my own.

“Without the help of staff from CHAS, I would’ve struggled to move on in life without my princess. I’ll never forget what they have done for my family over the years.

“That's why CHAS needs people to support their Ramadan campaign so they can give this vital care to so many other families across Scotland who desperately need it.”

The campaign, which is running until May 5, aims to raise awareness of the charity’s work within Muslim communities and to encourage donations during the 30-day-long Islamic celebration.

Currently, CHAS supports a number of Muslim children and is keen to reach even more families who need its help.

Charlie Leavy, CHAS fundraising campaigns co-ordinator, said: said: “We are proud to launch our first ever Ramadan campaign following consultation with Muslim staff, volunteers, families and community groups.

“We know from the CHiSP3 study we commissioned in 2020 that children from a South Asian background are more likely to have a life-shortening condition than those from a white background.

“As a charity committed to reaching every child in Scotland with a life-shortening condition, we hope we can raise awareness of CHAS services within Muslim and Muslim South Asian communities during the month of Ramadan as well as diversify our supporter base at the same time.”

To donate to the Ramadan campaign or to find out more, click HERE.