Tributes paid to 'special' baby girl with rare disease who died 9 days after birth
A Scots couple have been left heartbroken after their newborn daughter tragically died just nine days after she was born.
Little Rita Grace Ghazala was born on December 9, 2024, but sadly, she never made it home.
The newborn died just nine days later at Glasgow's Royal Hospital for Children, at the exact same time that she was born, 3.34pm.
Rita was diagnosed in the womb with the rare and life-limiting condition Edwards' Syndrome, also known as Trisomy 18, at just 34 weeks. Despite the devastating diagnosis, mum Elizabeth and dad Fadi clung to hope they'd be able to bring their firstborn home.
Edwards' syndrome (Trisomy 18) is a genetic condition, caused by an extra chromosome in the body's cells. With trisomy 18 there are three copies of chromosome 18 rather than the usual two.
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Elizabeth, 31, and Fadi, 34, are "incredibly proud" to be Rita's parents - speaking to Glasgow Live Fadi said: "Even though it was short, the time that we got with Rita was very special, we wouldn't change that. We got to meet her, hold her, and love her - we got a lot from her.
"She knew us - although she was in an incubator she recognised our voices and knew when we were around."
Rita was well-known on the Neonatal Intensive Care Unit (NICU) and by the palliative care team - she kept them "on their toes", said Fadi, also a doctor. He expressed his gratitude for the doctors and nurses caring for his baby girl, saying: "I'll never forget the dignity they gave Rita in her nine days - they really loved her.
"Without their love and support for Rita, we would not have had the wonderful time together to bond as a family."
The couple stayed at Crossbasket House while their baby received treatment in hospital and said the facility was a 'godsend' in the toughest time of their lives.
Despite the odds stacked against her, tiny Rita underwent major gullet and windpipe surgery just two days after being born. The tot also survived an emergency ventilation procedure during the night.
Her parents said: "From the get-go she was incredibly brave, resilient and peaceful; and she made us very proud parents."
Now, Elizabeth and Fadi are determined to honour their daughter's memory and raise vital funds for Glasgow Children's Hospital Charity by helping other families facing similar heartache.
Today, July 23, Fadi begins his challenge 'Ride for Rita'. The team will cycle 210 miles across Scotland, connecting the neonatal units in Aberdeen and Edinburgh before finishing in Glasgow, at the NICU where Rita was treated.
He said: "I'm as prepared as I can be - I'm feeling confident but realistically it's going to be a challenge, but one I'm looking forward to.
"This has been a real focus for me, it's been positive in my journey. We have so much support, I think it'll be a great event".
During the four-day event, Fadi will be joined by family and friends. Rita's "wonderful" mum Elizabeth will be joining the team from Edinburgh to Glasgow along with Grandma Anne, Auntie Eleanor and other loved ones.
The team hope to receive a big warm welcome upon their arrival in Glasgow.
Kirsten Watson, CEO at Glasgow Children's Hospital Charity said: "We are truly honoured that Fadi, Liz and their loved ones are taking on this incredible challenge in memory of Rita. We know that Rita's resilience will be an inspiration to the team throughout their journey, and will help them conquer every challenge as they ride to the finish line in Glasgow.
"The Ride for Rita challenge is raising vital funds in support of the Family Bereavement Support Service at Crossbasket House, creating a meaningful legacy for a very special girl."
The Ride for Rita fundraiser remains open, click here to donate.
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