Shuhd, was diagnosed with a bilateral retinoblastoma – a rare eye cancer in both eyes (Image: Faiz Garcia/Childhood Eye Cancer Trust / SWNS)
Shuhd Garcia was diagnosed with bilateral retinoblastoma in November 2022, after her parents detected an unusual “white reflection” in her eyes in a photograph.
Two year old Shuhd had to start chemotherapy, but devastatingly, the cancer in her right eye spread and she ended up needing her eye removed and a prosthetic eye fitted.
Despite continuing on chemotherapy, the cancer in her left eye persisted, prompting ten sessions of laser therapy to stop its growth. Shuhd now faces lifelong monitoring to ensure the cancer doesn’t return.
Her father Faiz, a 34 year old translator from Shepherd’s Bush, London, recounted the pain of discovering her condition: “When we got her diagnosis, I couldn’t sleep and my wife was crying all the time – we didn’t know what to do.
“We felt hopeless, we didn’t know how to help our daughter, and we also didn’t have any idea what this tumour was like.”
Not knowing anyone personally affected by retinoblastoma deepened their anxiety. “When I read online what it was, I was more worried – I was really scared for Shuhd.”
The first sign of the terrible disease presented itself when Shuhd was just five weeks old and appeared in a photo taken by her mother. Taking a closer look at the image, both parents noticed the alarming white reflection in her eyes.
Shuhd’s parents detected an unusual white reflection in her eyes (Image: Faiz Garcia/Childhood Eye Cancer Trust / SWNS)
Faiz said: “We first noticed symptoms of retinoblastoma in Shuhd when she was around five weeks old.
“Shuhd’s mother had taken a picture of her with the flash on. We then noticed a glare or white reflection in her eyes.
“I had not heard of retinoblastoma before my daughter was diagnosed. It was completely unfamiliar to me, and I did not know anyone who had been diagnosed with this condition.
“It was a daunting experience, but learning more about it and receiving support has been crucial.”
Concerned, Faiz took Shuhd to their GP, only to be told she would need a referral to an optician – an appointment that could take some time.
Unwilling to wait amidst growing worries, Faiz rushed Shuhd to A&E at St Mary’s Hospital, which led to a prompt referral to Great Ormond Street Hospital in London.
Faiz recounted: “We received a call from Great Ormond Street Hospital the following day, informing us that they had referred us to the Royal London Hospital for an examination under general anaesthetic.”
Shuhd with dad Faiz (Image: Faiz Garcia/Childhood Eye Cancer Trust / SWNS)
After comprehensive examinations, the fear turned into reality; it was confirmed eleven weeks into her life that Shuhd had bilateral retinoblastoma in both eyes.
Faiz reflected on the ordeal: “This period was incredibly challenging and filled with uncertainty, but receiving a definitive diagnosis was a crucial step in moving forward with her treatment.”
Following the difficult news, Faiz and his wife braced themselves for the next step in their daughter’s critical journey as they were informed that Shuhd would need chemotherapy.
Shuhd braved two bouts of chemotherapy that failed to halt the disease’s progression, leading doctors to the grave decision of removing her eye and fitting a prosthetic.
“The chemotherapy just wasn’t working, it was spreading at a speed that doctors couldn’t control,” Faiz said.
“She had six cycles of chemotherapy, along with laser therapy and cryotherapy. During this treatment, she had an enucleation – removal – of the right eye while receiving chemotherapy.
“Each of these options carried its own set of challenges and implications, but they were all necessary steps to address her condition effectively and to keep her alive.”
Three weeks after Shuhd got her right eye removed, she returned to chemotherapy which she finished in November 2023.
But three months later, the cancer continued to grow and Shuhd had to undergo laser therapy for another six months.
Faiz remains cautiously hopeful, noting, “Shuhd continues to be monitored after receiving treatment. After the initial treatments that she received, there was a relapse of her tumours a few months later.”
Fortunately, recent visits have brought some relief. “However, after they were treated with laser therapy, we haven’t had any concerns during the last two or three visits.
“Despite this positive development, Shuhd will need to attend regular check-ups to monitor her condition in case of further relapse.”
She will need to be under constant supervision to make sure the cancer doesn’t grow for the rest of her life.
Despite the challenges she’s faced, Faiz describes his daughter as a “happy girl” who loves “being out and about”.
Shuhd, was diagnosed with a bilateral retinoblastoma – a rare eye cancer in both eyes (Image: Faiz Garcia/Childhood Eye Cancer Trust / SWNS)
He said: “Shuhd is just like any other child. She loves to play, enjoys it when I read books to her, and adores walks in the park.
“She has an incredible zest for life, always moving around with joy, and everybody who meets her is charmed by her delightful personality.”
The Childhood Eye Cancer Trust (CHECT) is on a mission to raise awareness among parents and health professionals about the key symptoms of eye cancer, which include a white glow in the eye visible in flash photography or certain lighting conditions, and a squint.
Richard Ashton, Chief Executive of CHECT, emphasised the rarity and seriousness of the condition: “Retinoblastoma is rare, with around one baby or young child being diagnosed in the UK each week.
“Symptoms can be quite subtle, and children often seem well in themselves which can make it hard to recognise that anything is wrong. In just under half of all cases, a child must have an eye removed as part of their treatment.
“We are grateful Shuhd’s symptoms were recognised early, allowing her to receive treatment. If you are worried that a child you know may have retinoblastoma, please get them seen by a GP or optician ASAP.
“Contact the Childhood Eye Cancer Trust support team at [email protected] and they will provide you with information to take along to your appointment”