My Story:


From Christchurch

Curtis is an amazing fourteen-year-old from Christchurch. He is very smart with technology and loves anything to do with computers. He has a passion for history and is full of interesting facts and information. He is interested in everything military, and dreams of a career in the Air force. Fun to be with and always smiling, one would not guess the complicated medical journey that Curtis has navigated. 

Beginning with a normal, uneventful birth, Curtis was a content and happy baby. A ‘dream baby’ according to mum Leeann. She recalls him being easy to settle, always happy and smiley, with no problems feeding and sleeping well. As her first baby, she knows she was blessed to have such a gentle start to parenthood. At the age of sixteen months however, that peaceful life was shaken up.

Curtis suddenly became unwell, he began to have a series of tummy aches, gastric upsets, respiratory infections, and earaches. He was continuously unwell, grizzly, and unsettled. Not his normal placid self, Curtis became clingy and was clearly distressed. To complicate matters, the Christchurch earthquake occurred in this period as well, the family home was not structurally damaged thankfully, but the shaking was definitely felt, and household items crashed down causing breakages and shocking everyone.

The ongoing aftershocks were disturbing and caused added stress. It was a tough time to be dealing with an unwell baby. After a period of always being at the family doctors, being prescribed repeats of antibiotics that did not resolve his symptoms, his parents finally demanded a hospital referral as Curtis was now constantly in pain and vomiting. Some small improvement occurred as they awaited the hospital appointment. Taking a short break in Invercargill, Curtis again became ill, with extreme tummy pain and vomiting. The GP suspected appendicitis or even a twisted bowel. Medication settled him a little, but on returning home, they ended up in the emergency department of Christchurch children’s hospital. Within hours he was admitted to hospital and taken to theatre for exploratory surgery to investigate his abdomen. The surgical team called Leeann and Brandon for an urgent meeting. The surgeon had discovered a large tumour on the liver, a serious condition that explained the pain.

Biopsy results conformed a diagnosis of Hepatoblastoma, cancer of the liver. Within 3 days, life-saving chemotherapy was commenced at Christchurch hospital. Genetic testing later showed that Curtis carried the FAP gene mutation. The family were called in for genetic testing and it was further discovered that his father Brendan carried the same FAP gene. The family was rocked further when Brandon was examined and it was discovered his bowel was filled with numerous pre-cancerous polyps (caused by the FAP mutation), and he was advised to have a complete bowel removal within 3 years to ensure his survival. With no visible symptoms, this was a shock to the family. They marvel that Curtis’s illness and subsequent diagnosis most likely saved his fathers life. Brandon has since had his own ongoing medical journey over the last 14 years following this diagnosis. Meanwhile, in April of 2011, Curtis was referred to the Starship liver team and transferred to Starship hospital to be assessed for an urgent liver transplant. He was placed on the liver transplant list and returned home to await an available organ. 8 weeks later the family received a call to say a possible match had been found. The call came at 2.30am, and by 5.30am Curtis and his parents were on a flight to Auckland. Following a series of rushed tests and preparations, Curtis was in the theatre by 4.30pm undergoing his liver transplant. A long wait followed for Leeann and Brandon through to 1.30am the next day when he was released to picu. The first night in picu was tense as Curtis spiked a temperature, but thankfully this did not develop to a problem. In total he spent three days in picu before being transferred to ward 26b for recovery. He healed well and after two weeks was released to Ronal Macdonald house. The family were relieved to see he was recovering well and after a total of 10 weeks in Auckland, they were finally allowed to take Curtis home to Christchurch. Post transplant Curtis did well at home, still under the close watch of the Transplant team and gastroenterologist, Dr Andrew Day. His new liver was under close surveillance, as well as his bowel and stomach which were monitored because of the FAP condition, which is known to cause polyps and cancerous growths. Curtis was also being checked regularly by the Heart team; having undergone chemo treatment the heart is always checked carefully on a regular basis. One complication that resulted from the chemo treatment, was damage to his hearing. Curtis was discovered to have hearing problems at the age of three and will wear hearing aids for life. All went smoothly until Curtis turned eleven years. The Heart team detected the growth of a small membrane in his heart and his parents were advised that open heart surgery may be required in the future. Checks became more frequent, but all was stable, until July 2023 when a second heart membrane was detected. Curtis was scheduled for heart surgery in January 2024. Once again, the family made a journey to Starship hospital. Curtis was admitted for 9 days. His surgery went well, thought there were signs of a fluid build-up around the heart post-surgery. He spent a further 3 days at Ronald Macdonald house and was then released home. He appeared to be doing okay and had returned to school for his first week, when he was scheduled for an echo scan to check his heart. The doctors were surprised to find a large build-up of fluid around the heart again. Sadly, he had to be admitted to Christchurch hospital so his heart could be drained. Over 1.3 litres of fluid were drawn off. He was released, and then checked in clinic a week later and a further 700ml had built up and required further draining. He was again admitted, and new medicines trialled, but the problem persisted. After a further week in Christchurch hospital, doctors decided to transfer him to Auckland Starship hospital, for further heart surgery. He found himself undergoing a pericardium window procedure, followed by 5 days on ward 23b, and a further 4 days at Ronald Macdonald house. At the time of writing, this latest surgery was behind him and Curtis was excited to be heading back home again for Easter. All going well,Curtis hopes to start school again by term two after clearance from his Heart team. Considering all he has been through; Curtis is calmly taking all this disruption in his stride. He is a courageous young man. He was thrilled that his teachers and schoolfriends have stayed connected, checking up on his progress. He is looking forward to being home again, especially with Easter coming up (Curtis loves Easter eggs!). Leeann expressed her appreciation of IDFNZ KIDS Foundation and Heart Kids, giving support through this medical journey. All the nursing and clinical staff have been great, Curtis has three teams of doctors and nurses across two hospitals, overseeing his care. His liver team has been following his heart surgery closely and were pleased to learn that his liver function is going well.

We wish you a speedy recovery Curtis, and hope that the next few months of recuperation go to plan. Looking forward to seeing you at the youth workshops! Aroha, IDFNZ