Amelia & Grace
Grace and Amelia were diagnosed with a rare condition called Twin to Twin Transfusion Syndrome at 20 weeks gestation. They received lifesaving laser surgery in utero and were monitored very closely by the Auckland Maternal Fetal Medicine Team.
Grace developed hydrops after that surgery and went into heart failure. Her parents were told she would have to get to 32 weeks gestation for the doctors to be able to help her heart. The twins arrived very early at 27 weeks and 1 day. Grace a very swollen 1300g and Amelia a tiny 880g.
The twins had a rough time in NICU with infections and blood transfusions. Grace had her first open heart bypass surgery at 8 weeks of age when she finally hit 2kg. She has severe right ventricle dysfunction, dysplastic tricuspid valve and pulmonary valve, muscular ventricular septal defect and during her heart surgery they had to put a hole in her atrium to help her pulmonary valve work more effectively which was closed in 2022 resulting in her finally being off home oxygen therapy. Both girls have extreme chronic lung disease from being born so early which can make winters a little rough.
Grace also has cerebral palsy and global developmental delays. She works closely with a physical therapist, occupational therapist, speech language therapist, dietician, hippo therapy (riding for the disabled) and does lots of home therapy to work on decreasing the spasticity and building strength, coordination and balance.
The girls have managed a few days a week at kindergarten since turning 4 and will be off to school with their big brother watching over them; and attend dance class (with the help of Mum) - they both loved performing on stage for the end of year recital.
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.
