Mali’s Story

The Noah’s Ark Children’s Hospital for Wales provides specialist and life-saving treatment for thousands of children from all across Wales each year, Mali was admitted in 2016, here’s her story.

When five-year-old Mali from Bridgend suddenly developed persistent bladder problems her doctor initially thought that she was suffering from a stubborn water infection. But after months of trying various antibiotics which failed to have any impact on her deteriorating condition, Mali was referred to her local paediatric department where tests revealed that her body was failing to produce and antidiuretic hormone called vasopressin. As a result, Mali had developed a type of diabetes called CDI, which can be caused by damage to the pituitary gland. To find out what had caused the damage, Mali was referred for an MRI at the Noah’s Ark Children’s Hospital for Wales.

Mum, Sam, says: “After months of worry, we were feeling relieved that we finally had a diagnosis. So when we were told that the scan had revealed a tumour on her pituitary gland, it almost felt like an out of body experience. Suddenly we were being introduced to the brain tumour specialist who told us that Mali would need an X-Ray to diagnose the type of tumour she had. I can’t really explain how I felt during that time. I couldn’t eat, sleep or even drink, I felt so sick with fear.”

The X-Ray results were a combination of both good and bad news. Mali had two other tumours other than the one on her pituitary but none were cancerous. She was diagnosed with a condition called Langerhans cell histocytosis (LCH) and though she would need a year of chemotherapy to treat it, her specialist was confident that Mali would respond well.

“Though her diagnosis was in many ways the best we could have hoped for, we knew we had a bumpy road ahead. In the lead up to Christmas, Mali had a four hour operation during which she had a lumbar puncture and biopsy and her chemotherapy port fitted ready to start treatment. I think that was the lowest point for me. We had no idea then how she was going to respond or whether she would lose her hair and there was so much we didn’t understand.”

It was around this time that the Tallis family were introduced to Kimberley, play specialist on the oncology ward. Sam describes Kimberley as a breath of fresh air for them all but says that for Mali, she was heaven sent.

Sam says: “Kimberley spent time getting to know Mali so that when the treatment started, she seemed to know instinctively what she would need. She was honest with her in a way that as parents, we couldn’t be because we were so desperate to protect her. Kimberley just told her the truth about what was going to happen but in a positive, upbeat way which meant that Mali trusted her completely and could relax in her company. Treatment was understandably scary for Mali during that year but Kimberley always found a way to make it fun, whether by turning the dreaded chemotherapy stand in to her favourite Disney character or creating a countdown chart which Mali couldn’t wait to tick off at the end of each treatment.”

After a year of chemotherapy, Mali got to ring the end of treatment bell in January, wearing a t-shirt that said ‘Today I graduate from superhero school’. As with any trip to Noah’s Ark, Mali was most excited about seeing Kimberley, her constant hospital companion.

Sam says that she’s a big believer that everything happens for a reason and thinks the reason for Mali’s illness was to bring Kimberley in to her life.

“I don’t think even Kimberley realises how important she is to Mali. After her treatment ended and we were home again, I asked her what she would like to say to Kimberley if she could. She said “Thank you for making my life easier”. We had it put on a keyring for Kimberley who said she would keep it forever.”

The hospital is named after the Noah’s Ark Charity which was set up 18 years ago to first build and then equip it. Today it continues support the hospital by funding life-saving equipment, facilities and family service.

One of the support services that the charity helps fund is the play specialist team that, as you can see from Mali’s story, are hugely loved by both children and parents at the hospital.

For more information on how you could help the Noah’s Ark Charity create brighter todays and better tomorrows for more children like Mali, visit www.noahsarkcharity.org