Raising hope for little survivor

Ependymomas are tumours that form on the brain and spinal cord.

Rare condition

The O’Neill family found out about Layla’s condition in early 2013 after she had a recurrence of illness.

Layla’s aunt Paula O’Neill said, “She kept getting sick and the doctors kept saying it was a viral infection. She was experiencing pain in her legs, which we all thought was growing pains.”

In May last year Layla started vomiting blood and her mother, Sharyn immediately took her to the hospital. Layla was given an MRI scan which picked up that there was fluid on her brain and spots on her spine.

Paula said, “The doctors said it was the first time they’d ever seen something like this. They operated and put in a shunt which takes the fluid away from her brain to relieve the pressure. They told us that if we had waited a day more to bring her to the hospital she would not have survived.”

Paula added, “Layla is such a little fighter. She’s obsessed with Spiderman – he’s her favourite superhero.”

The tumours on Layla’s spine make daily life difficult for her. Paula explained, “The tumours are in her central nervous system so they make her very emotional. They also affect her bladder and her bowels and put pressure on her brain. Her immune system is also very weak. She has to wear a mask every time she goes out.”

The initial diagnosis was that the tumours could not be removed surgically as the surgery could paralyse Layla for life. Layla’s parents are pinning their hopes on proton treatment which is only available at the MD Anderson Cancer Centre in Texas. However, the treatment will cost R2.8 million. To raise money for Layla’s treatment her family and friends have started a non-profit organisation called Raising Hope for Layla which hosts charity events such as bingo nights and gym marathons to raise funds.

Bump in the road

By October last year the charity had made excellent headway with their fundraising and it seemed that Layla’s treatment was just around the corner. Layla had just been accepted for treatment at the MD Anderson Cancer Centre when an MRI scan revealed that her tumours were multiplying and the existing ones had increased in size. Layla’s doctors decided that while Layla needed the treatment the flight was likely to paralyse her.

It was decided that Layla would undergo seven weeks of radiation treatment in South Africa before attempting the flight to Texas. During the radiation treatment Layla had to be administered a general anaesthetic daily. During the radiation treatment Layla lost a lot of weight and then started to lose her hair. To show their support Sharyn and many of her friends decided to shave their hair off too.

Illness takes no holiday

In December lat year, feeling as though Layla was well enough, Sharyn decided that the family needed a holiday. The O’Neill family travelled to Ballito on the North Coast of KwaZulu Natal. While on holiday Layla began complaining of chest pains and ended up in an isolation ward at a hospital in Ballito with underlying pneumonia. After responding to treatment she was finally able to return home. On returning home Layla then started to complain of severe spinal pain and she was admitted to hospital again. “It is the most frustrating thing having to know that she is suffering and there is nothing that we can do to make it better,” said Belinda Lombard, a close friend of the O’Neill family.

To find the source of her pain Layla underwent an MRI scan which revealed that one of her tumours had grown even more and was putting pressure on her spine because of a fluid build up.

Delicate operation

Doctors decided that Layla would have to undergo surgery to insert a spinal shunt to relieve the pressure. On 17 January she had a spinal shunt inserted. The operation took a gruelling four hours and 15 minutes to complete yet doctors succeeded in not causing any damage to the movement of Layla’s legs.

After the operation Layla had a very high fever and had to learn how to walk and eat again.

Sharyn said, “As her mom I feel like my life has been shattered into tiny little pieces and I’m struggling to glue them back together. All I want is for Layla to just have a break and then maybe I can take my first breath in eight months.”