Mother of girl, seven, who suffers from rare genetic condition hopes she will be home for Christmas this year

The mother of a seven-year-old girl who suffers from a rare genetic condition has spoken of her hopes that she will be home for Christmas.

Zarwa Kakar, who lives in London, has geleophysic dysplasia, a rare type of dwarfism that only affects just over 30 other people in the world.

It means her airway is too small and it is hard for her to breathe, and Zarwa has spent most of her Christmases in hospital.

Her mother, Fahima Kakar, 31, explained that Zarwa has been treated at London’s Great Ormond Street Hospital (GOSH) since 2020 and spent last Christmas there.

But she said the GOSH charity worked hard to ensure Zarwa and all the other children being treated there had a “magical” Christmas.

Fahima told PA Real Life: “The GOSH charity gave Zarwa a really amazing Christmas.

“She went to sleep and woke up to find her ward covered in twinkling lights and decorations. She had a stocking packed with gifts. The play team did arts and crafts, and made snowflakes for her. She had a visit from Santa.

“And she got to meet the Grinch! 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 even took part in the charity’s Christmas TV advert, which showed real life footage of 12 families experiencing Christmas on the wards last year.

Since last Christmas, Zarwa has continued to have support at GOSH, spending time there as well as at home.

Describing Zarwa, Fahima said that at home she is “very sassy, very loud, loves singing and dancing”.

“She loves music, loves dancing, arts and crafts, Disney.”

Fahima said Zarwa – whose favourite Disney character is Stitch – was born a healthy baby in 2017.

But she started to suffer from recurring chest infections and bronchiolitis – a common lung infection in young children – when she was a few months old.

Fahima explained: “She’d get chest infections once, even twice a month.

“And then it was around May 2018 when I took her to Chelsea and Westminster Hospital for another chest infection, and then they said they could hear a murmur.

“They referred us to the Royal Brompton and that’s where they found out she has a narrowing of the valve, and that she had a heart condition.

“She was so unwell that our first Christmas as a family was spent in our local hospital.”

Fahima said Zarwa was eventually referred to GOSH as her case was so complex.

Zarwa had surgery to replace her heart valve and then over the next five years she had to have operations every three months to widen her airway with a balloon (called balloon dilation).

Even when she was not in hospital for planned surgery, she was back and forth with chest infections and trouble breathing.

Fahima said that the pandemic made Zarwa’s hospital visits even more complicated, but somehow they got through it.

They then discovered she had a genetic condition, geleophysic dysplasia, a rare type of dwarfism that only affected just over 30 other people in the world.

This means Zarwa’s airway is too small, making it hard for her to breathe.

She had a long, risky operation to reconstruct her airways and in October last year she had yet another heart valve operation.

Fahima said: “So, now we’re at that point where there’s nothing else that can be done for her and she’s getting worse symptoms. Like stiff fingers and she’s very breathless.

“We are now going to be 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.

“I don’t think there’s any words to explain how you feel when you know that there’s nothing that can be done. And there’s nothing as a parent, that you can do as well.”

Fahima said she and her husband Waris and Zarwa’s four-year-old brother, Mehran, all help to support one another.

She went on: “I think, as parents, we become quite selfish because we want them to be there, not realising how much sometimes they suffer. But then that selfishness is out of love as well.

“It’s quite hard, but now I’ve this thing where I’m like, ‘No, everything is in God’s hand’. I’m just going to put my trust in God.

“We have to carry on with our daily life and we give her the enjoyment and stuff that she needs. We’ve just left it to God. Whatever his plans are, we trust that, and we just try to carry on with life as normal.”

Describing the family’s experiences at GOSH, Fahima said it had become “like a home” to the family.

She went on: “It’s amazing. It’s so much fun there.

“Last year we were there from August, and then we went home for about two weeks, and then we came back in October, and then we were there until December, so it’s quite a long time.

“When it’s time to leave you’re happy, but then you’re also upset. It’s like you’re leaving home as it has become like a home to us.”

“Everyone there is amazing. You get so much support.

“At Christmas the whole vibe in the hospital is amazing. The staff do crafts and they involve everyone. It’s a really nice cosy feeling in there.”

Fahima said she is also “really thankful” for the accommodation available for families to stay in, which is funded by the GOSH charity.

The mother-of-two said she is trying not to get her hopes up too much that Zarwa will be home for Christmas this year.

Fahima said: “We don’t plan anything, because you never know. What I try to do, if she’s home, I try to do everything in the morning, because if she gets unwell and has to go into hospital, then at least we’ve done it. Because once she goes in, she’s in for quite a while.”

Fahima said Zarwa has asked for an iPad for Christmas and is also looking forward to celebrating her eighth birthday on December 22.

She said the family likes to have a special breakfast of hash browns, sausages and eggs on Christmas morning, and then they swap presents.

Zarwa has decorated a bauble for the Christmas tree at London’s St Pancras station, which has been created in partnership with GOSH charity, and shines a light on the hopes and wishes of seriously-ill children.

Zarwa’s wish was to be a nurse or teacher when she is older.

A spokeswoman for the GOSH charity said: “No child should have to spend the festive period in hospital. But when they have to Great Ormond Street Hospital Charity is there to make it feel like home.

“GOSH supports 700 seriously-ill children every day and has 67 different clinical specialties – the highest number at any children’s hospital in Europe.

“The charity funds a play team to give children those important memories and bring joy to the wards, creating magical moments like carol singing, Christmas parties and Santa visits.

“The charity also funds a chaplaincy catering to all religions to give families spiritual support at their toughest time, and accommodation right by the hospital so parents can be near their children during long stays in hospital. This means loved ones can be there from early morning stocking opening, all the way to bedtime stories and goodnight kisses.”

Medics at GOSH find new treatments and cures for the rarest and most complex childhood illnesses so more children can look forward to many more Christmases to come.

The hospital has been transforming the lives of seriously-ill children since opening its doors in 1852 and has always depended on charitable support.

To support Great Ormond Street Hospital Charity’s Christmas appeal visit: www.gosh.org/donate/christmas.