In 2023, Nuala, who was just 10 months old at the time, from Liverpool was diagnosed with an extremely rare cancer which affects just six people in England a year, called Alveolar soft part sarcoma.
Alveolar soft part sarcoma can come in different types of soft tissues such as muscle, fat or nerves. It can affect anywhere in the body, but in Nuala’s case, the tumour grew behind her left eye.
Before her diagnosis, Nuala’s eye had become increasingly bloodshot and the shape had changed, so worried mum Megan took her to her A&E when she was 9 months old and she was sent her for further tests. Nuala was then referred to Alder Hey’s oncology and ophthalmology teams.
Since then, Nuala who is now 19 months old, has had three surgeries; the last one was to remove her eye to prevent her cancer from progressing and numerous hospital check-ups, MRI scans, x-rays and fittings for her new eye.
A very resilient Nuala rang the end-of-treatment bell in January and the family celebrated with a trip to Wales, kindly gifted through the Kids Cancer Charity. Here they enjoyed the sun, sea and lots of ice cream! At the end of June 2024, Nuala, will receive a prosthetic eye.
“Nuala has had to learn to cope with sight only in one eye which means she has taken a bit longer to learn to walk, it also means she has to wear an eye patch and still has lots of hospital check-ups but she’s learning to cope so well. It meant she couldn’t start nursery until March but has made friends and settled in. She is now learning to walk and is very good at letting us care for her orbit (socket) and allows us to put her patch on for nursery every day. The next step will be her eye fitting, which may be tricky as she is still only 19 months, so getting her to sit still is a task but she amazes us every day with her resilience and how well she’s coped.”
Megan, Nuala’s mum
Nuala’s surgeon Consultant in Paediatric Ophthalmology Mr Ankur Raj said: “Nuala developed a tumour involving one of the muscles surrounding her eye. This gradually increased in size and resulted in her eye being pushed forwards and to the side. She was absolutely fantastic through the various examinations and tests she had in the first few weeks. First a biopsy was done and this confirmed that this was an alveolar soft part sarcoma, something I had never seen before affect the eye. Although we tried to remove only the tumour, some of the tumour cells were found at the edge and so we had to proceed with removing the eye and the tissues surrounding it. This is a very rare thing to do in children. Her resilience has been truly amazing.
Taran Malhotra, Lead Reconstructive Scientist and Specialist Maxillofacial Prosthetist at Aintree University Hospital, said: “Creating a prosthetic eye for Nuala was a unique experience. The conventional technique of creating a prototype prosthesis involves making a mould of the eye socket and creating a wax prototype on the patient’s face while they are in the room. Given Nuala’s young age, such an invasive approach wasn’t feasible.
“Instead, we used the advanced 3D technology at Aintree Hospital, combined with CT and MRI scans from Alder Hey, to make a prosthesis tailored to Nuala’s precise measurements, with minimal physical contact.
“Aintree’s 3D planning and prosthetic rehabilitation service is nationally renowned for its excellence and the use of 3D technology in this process for Nuala has been revolutionary.
“We fitted Nuala with her first prosthesis in June and we intend to see her again in the next few weeks to provide an improved version of the existing prosthesis. In the future, she can have orbital implants placed into her bone providing better retention, eliminating the need for any adhesive. As Nuala grows, we will continue to create progressively larger prosthetics to accommodate her development, ensuring the prosthetic remains functional and promotes her physical and emotional well-being.”
Mum Megan said: “We were shocked to learn of Nuala’s diagnosis but the teams at Alder Hey and Aintree have really supported us every step of the way and Nuala has adapted beautifully and is now thriving. Finding out your baby has cancer is one of the most heartbreaking things a parent can hear but we cannot thank the staff at Alder Hey enough for how quickly they acted to save her life. We’re so grateful to have these hospitals so close by! “
To say thank you to Alder Hey and the teams that cared for Nuala the family are doing numerous fundraisers to raise money for Alder Hey Children’s Charity including the Conniston challenge in July, a charity golf day and a ‘celebrating differences’ day at Nuala’s older brothers school.