The mother of a seven‑year‑old girl living with a rare genetic condition has shared her hopes that this Christmas will finally be spent at home, after years of festive seasons in hospital.
Zarwa, from London, has geleophysic dysplasia, a rare type of dwarfism that affects just over 30 people worldwide.
The condition means her airway is too small, making it difficult for her to breathe, and has led to repeated hospital stays throughout her life.
Her mother, Fahima, said Zarwa has been treated at Great Ormond Street Hospital (Gosh) since 2020 and spent last Christmas there.
Despite the challenges, she said the hospital’s charity worked hard to make the festive period special for children on the wards.
“The Gosh charity gave Zarwa a really amazing Christmas,” Fahima said.
“She went to sleep and woke up to find her ward covered in twinkling lights and decorations. She had a stocking packed with gifts.”
She said Zarwa took part in arts and crafts, made snowflakes and had a visit from Santa.
“And she got to meet the Grinch,” she added. “She had watched the film so many times and couldn’t believe she met him in the flesh. So we can say the Grinch saved Christmas for us.”
Zarwa also appeared in the charity’s Christmas television advert, which showed real-life footage of 12 families spending Christmas on hospital wards last year.
When she is at home, Fahima said her daughter is “very sassy, very loud, loves singing and dancing”, with a love of music, Disney films and arts and crafts.
Zarwa was born a healthy baby in 2017, her mum said, but began suffering from recurring chest infections and bronchiolitis when she was only a few months old.
Fahima said her daughter was having chest infections once or twice a month.
In 2018, during another hospital visit, doctors detected a heart murmur.
Zarwa was referred to the Royal Brompton Hospital, where medics discovered a narrowing of her heart valve.
Her condition was so serious that the family spent their first Christmas together in hospital.
Because of the complexity of her case, Zarwa was later referred to Gosh.
Zarwa underwent surgery to replace her heart valve, and after being repeatedly admitted to hospital with breathing difficulties and chest infections, doctors eventually identified the underlying cause as geleophysic dysplasia.
She has since had multiple operations, but her condition has continued to worsen.
“So, now we’re at that point where there’s nothing else that can be done for her and she’s getting worse symptoms,” she said, describing stiff fingers and increasing breathlessness.
She said the family has now been referred to the palliative care team.
“I actually thought the palliative care team was like an end-of-life thing, but they explained to me that, no, it’s somewhere that you get support to make her comfortable and see how everything goes.”
Fahima said she, her husband Waris and Zarwa’s four-year-old brother Mehran support one another through the difficulties – and Gosh had become “like a home” to the family during long stays.
In the run up to Christmas, Zarwa has decorated a bauble for a Christmas tree at London’s St Pancras station, created in partnership with the Gosh charity.
Zarwa will turn eight on 22 December.
It is not yet known if she will be home for Christmas this year, and while Fahima said she is doubtful of the possibility, it was their family’s hope.
A spokeswoman for the Gosh charity said it supported 700 seriously ill children every day and funded play teams, chaplaincy services and accommodation to help families through long hospital stays, particularly during the festive period.
