Auto Amazon Links: No products found. Blocked by captcha.
A mother from London is hopeful that this Christmas might finally be spent at home with her seven-year-old daughter, after enduring several years of hospital stays during past festive seasons. Zarwa lives with geleophysic dysplasia, an exceptionally rare form of dwarfism that affects just over 30 individuals across the globe. The condition causes her airway to be unusually small, resulting in significant breathing difficulties and frequent hospital admissions throughout her life.
Since 2020, Zarwa has been receiving treatment at Great Ormond Street Hospital (GOSH), where she also spent last Christmas. Despite the challenges posed by her illness, the hospital’s charity puts a strong effort into making the holiday season special for children on the wards. Zarwa’s mother, Fahima, recalled how the hospital transformed the ward into a festive wonderland, saying, “The Gosh charity gave Zarwa a really amazing Christmas.” She described how Zarwa went to sleep and woke up to twinkling lights and decorations, along with a stocking full of presents. The celebrations included arts and crafts activities where Zarwa made paper snowflakes, and even a visit from Santa. Fahima added, “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 was also featured in the charity’s Christmas television advert, which highlighted real-life families spending the holidays in hospital.
At home, Fahima describes her daughter as “very sassy, very loud, loves singing and dancing,” with a deep passion for music, Disney films, and creative activities. Born a healthy baby in 2017, Zarwa began experiencing recurring chest infections and bronchiolitis within just a few months of her birth. By 2018, medical professionals detected a heart murmur during one of her hospital visits, leading to a referral to the Royal Brompton Hospital where doctors identified a narrowing of her heart valve. This serious condition resulted in the family spending their first hospital Christmas together, and due to the complexity of Zarwa’s case, she was eventually transferred to Great Ormond Street Hospital for further care.
Zarwa underwent surgery to replace her heart valve and continued to face hospital admissions due to breathing problems and infections. Ultimately, doctors diagnosed geleophysic dysplasia as the underlying cause of her symptoms. Despite multiple operations, her condition has progressively worsened. Fahima explained, “So, now we’re at that point where there’s nothing else that can be done for her and she’s getting worse symptoms,” mentioning issues such as stiff fingers and increasing breathlessness. The family has now been referred to a palliative care team. Fahima admitted she initially misunderstood the role of palliative care, saying, “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, her husband Waris, and Zarwa’s younger brother Mehran, aged four, lean on each other to cope with the ongoing challenges. She described Great Ormond Street Hospital as having become “like a home” during prolonged hospital stays. In the lead-up to Christmas, Zarwa has been involved in decorating a bauble for a Christmas tree display at London’s St Pancras station, a project organized in partnership with the GOSH charity. Zarwa will celebrate her eighth birthday on December 22. While it remains uncertain whether she will be at home for Christmas this year, her family holds on to the hope that it may be possible. A spokesperson for the GOSH charity noted that it supports 700 seriously ill children daily, funding services such as play teams, chaplaincy, and accommodation to assist families coping with extended hospital admissions, especially during the holiday season
Read the full article from The BBC here: Read More
Auto Amazon Links: No products found. Blocked by captcha.