Ben
Benjamin was diagnosed with Spina Bifida Myelomeningocele and Hydrocephalus at his Mum Catherine’s 20-week antenatal anatomy scan. The family knew they had a battle on their hands but were determined to do everything they could for their little boy.
Ben and Mum qualified for a ground-breaking fetal surgery in Brisbane, Australia (Mater Mother’s Hospital) to help close the opening in his spine. At 24 weeks gestation, he was the first unborn kiwi and 3rd overall in Australasia to have this surgery.
Due to some complications post-surgery, Benjamin was born at 33 weeks gestation. In the first week of his life, he had an MRI scan and a very large fluid-filled cyst called a syrinx was found in his neural tube in his spine. Untreated this may have caused tetraplegia so a ventriculoperitoneal shunt (VP shunt) was inserted in his brain to relieve the pressure of the syrinx. Since then he has had three shunt revision surgeries, a decompression, and a syringo arachnoid shunt placement.
During the early stages of his diagnosis in pregnancy, Ben’s family were told he would potentially not have any movement of his legs. However, Benjamin can walk with a walker and crutches and is cognitively meeting all his milestones. He is such a happy, bubbly and gentle boy.
“He loves playing with his older brother Jackson. Benjamin is a little miracle and we are so lucky to have him,” Catherine says.
Other special ambassadors
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PaigePaige was born on December 6, 2021, entering the world prematurely at just 23 weeks and 4 days gestation, and weighing a tiny 525 grams
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LuccaLucca was diagnosed with an extremely rare and highly aggressive cancer called Epethelioid Inflammatory Myofibroblastic Sarcoma when she was just 16 months old.
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SophieA urine test showed glucose, and a subsequent finger prick blood test showed elevated blood glucose.
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RichieHe had a persistent cough, had lost weight and become so lethargic he was short of breath even when lying flat on a bed.
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MelaMela is diagnosed with an incredibly rare condition called Moebius syndrome
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KaseKase lives with cystic fibrosis, a condition is typically detected at birth, but Kase was diagnosed at 8.
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JeremyBorn at 29 weeks and 5 days, Jeremy is one of the approximately 700 babies born preterm each year.
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JaideJaide lives with chronic asthma and type-1 diabetes.
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JacksonJackson had a tumour the size of a tennis ball attached to his optic nerve.
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HunterHunter was diagnosed with type 1 diabetes after his family noticed he was always thirsty and that his moods had changed.
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FinnFinn was diagnosed with hypoplastic right heart, when his mother was 20 weeks pregnant.
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FinlayFinlay was diagnosed with type -1 diabetes at three-years-old.
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IsabellaBella was diagnosed with cystic fibrosis at her Mothers 27-week anatomy scan
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EvaEva was born with only half a diaphragm after suffering a diaphragmatic hernia during fetal development.
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CorinCorin lives with a very rare genetic heart condition
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ChloeOur gorgeous little ambassador Chloe has suffered respiratory issues since she was an infant.
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BrookeAt six years old, Brooke was diagnosed with gelastic seizures.
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BraydenIn 2009, Brayden was cooking noodles when his t-shirt caught fire from the stove element. He received burns to 45 percent of his body.
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BenBenjamin was diagnosed with Spina Bifida Myelomeningocele and Hydrocephalus at his Mum Catherine’s 20-week antenatal anatomy scan.
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Amelia & GraceTwins Grace and Amelia were born prematurely at 27 weeks. They have extreme chronic lung disease and Grace had her first open heart bypass surgery at 8 weeks of age.
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AddisonAddison was diagnosed with a staph infection, which caused damage to her heart.
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Matt JohnsonMeet Matt Johnson, a former midfielder for the Blues rugby team. Matt had rheumatic fever when he was 13 and has been experiencing severe heart problems ever since.
