The mother of a seven-year-old girl with a rare genetic disorder has expressed her hopes for a holiday spent at home this Christmas, after enduring several festive seasons in a medical facility.

Zarwa, who hails from London, suffers from geleophysic dysplasia, an uncommon type of dwarfism that impacts just over 30 individuals globally.

This condition has resulted in her airway being too constricted, complicating her ability to breathe and requiring numerous hospitalizations throughout her life.

Fahima, Zarwa’s mother, mentioned that her daughter has been receiving care at Great Ormond Street Hospital (GOSH) since 2020, having spent last Christmas in the hospital.

Despite the hurdles, she praised the hospital charity for its efforts to make the holiday season memorable for the children on the wards.

“The GOSH charity provided Zarwa with an incredible Christmas,” Fahima recounted.

“She fell asleep and awoke to find her ward transformed with sparkling lights and festive decorations. There was also a stocking filled with presents.”

Fahima noted that Zarwa engaged in arts and crafts, created snowflakes, and had a special visit from Santa Claus.

“And she even got to meet the Grinch,” she continued. “She had watched the movie countless times and couldn’t believe she met him in person. So we can honestly say the Grinch saved our Christmas.”

Zarwa also featured in the charity’s Christmas television commercial, which showcased actual footage of twelve families celebrating the holiday in hospital wards the previous year.

At home, Fahima described her daughter as “very sassy, very loud, with a passion for singing and dancing,” as well as a great fondness for music, Disney movies, and arts and crafts.

Zarwa was born healthy in 2017, but her mother shared that she began to experience frequent chest infections and bronchiolitis at just a few months old.

Fahima mentioned that her daughter was suffering from chest infections one or two times each month.

In 2018, during yet another hospital visit, doctors identified a heart murmur.

Zarwa was referred to the Royal Brompton Hospital, where doctors discovered a narrowing in her heart valve.

Her situation was so critical that the family ended up spending their first Christmas together in the hospital.

Due to the intricate nature of her condition, Zarwa was subsequently sent to GOSH.

She underwent surgery to replace her heart valve and, after multiple admissions for respiratory issues and infections, doctors eventually pinpointed the root cause as geleophysic dysplasia.

Since then, she has had numerous operations, but her condition has continued to deteriorate.

“So, we find ourselves at a stage where no additional measures can be taken and her symptoms are getting worse,” Fahima stated, describing symptoms such as rigid fingers and increasing shortness of breath.

The family has now been introduced to the palliative care team.

“I had thought the palliative care team was exclusively for end-of-life situations, but they clarified that it’s a support system to ensure her comfort and manage her condition going forward,” she explained.

Fahima emphasized that she, her husband Waris, and Zarwa’s four-year-old brother Mehran provide mutual support through their trials, noting that GOSH has become “like a second home” for their family during extended stays.

As Christmas approaches, Zarwa has contributed to a bauble for a Christmas tree at London’s St Pancras station, a project associated with the GOSH charity.

Zarwa will celebrate her eighth birthday on December 22.

It remains uncertain whether she will return home for Christmas this year; while Fahima expresses skepticism about the possibility, the family continues to hold onto hope.

A representative from the GOSH charity said it assists 700 seriously ill children daily and supports play teams, chaplaincy services, and accommodation for families to ease the burdens of lengthy hospital stays, especially during the holiday season.