Simpson said specialists had yet to determine whether OHS played a part in a urethral blockage that caused Zavier\u2019s kidney issues.<\/p>\n
Health NZ Te Whatu Ora<\/a> group director of Auckland operations Dr Michael Shepherd said OHS was caused by a change in a gene called ATP7A. <\/p>\n \u201cPeople with OHS can have loose joints and skin, problems with the bladder and blood vessels, and small bony bumps at the back of the head called occipital horns,\u201d he said.<\/p>\n \u201cBladder problems are common, but kidney failure is extremely rare, which makes Zavier\u2019s case unusual.\u201d<\/p>\n Shepherd said having a clear genetic diagnosis had helped the healthcare professionals involved provide the right care and support for Zavier and his family.<\/p>\n Simpson said Zavier had six nightly dialysis sessions a week, each running for close to 10 hours.<\/p>\n \u201cIt\u2019s really opened our eyes to how incredibly resilient kids are. <\/p>\n \u201cThankfully, he\u2019s completely adapted to it.\u201d<\/p>\n She said she and Hull were matches for a kidney transplant, and the procedure was a possibility in 2026.<\/p>\n \u201cIt has to go to a specialist, who determines if a transplant is the best idea for the child.<\/p>\n \u201cThat should be happening this month, then we\u2019ll have a date.<\/p>\n \u201cThings can change, though, because lots of people need operations and transplants and things like that. But the ball is definitely rolling.\u201d<\/p>\n Simpson said Zavier and her other son would be monitored for the rest of their lives due to OHS.<\/p>\n Zavier\u2019s kidney function was 8% when he was first at Starship.<\/p>\n The contrast between then and now was hard to put into words, she said.<\/p>\n \u201cBefore dialysis, he was never able to run. Now, I\u2019m having to say \u2018Stop running in the shop\u2019. <\/p>\n \u201cRenal specialists are always laughing because he is so full of energy.<\/p>\n \u201cHe\u2019s just a normal 3-year-old.\u201d<\/p>\n Simpson said she hoped to link up with others who had been affected by OHS.<\/p>\n \u201cThere is a man called David Rose in the UK and I\u2019ve made contact with him. That has been incredible.<\/p>\n \u201cBut it would be nice if we could find someone in New Zealand or Australia, somewhere closer to home. Just someone to relate to.<\/p>\n \u201cThe chances are slim but you never know.\u201d<\/p>\n Rare Disorders NZ chief executive Chris Higgins<\/a> said the organisation had more than 150 support groups in its collective but none specifically for OHS. <\/p>\n \u201cWith over 7000 rare disorders, there are many disorders we do not come across until somebody contacts us.\u201d<\/p>\n Higgins said the organisation was not aware of specialists with expertise in occipital horn syndrome.<\/p>\n However, it was working with Health NZ Te Whatu Ora on \u201ca leadership and co-ordination mechanism\u201d to improve access to expertise, information and support for those affected by rare disorders.<\/p>\n \u201cThe Ministry of Health\u2019s Rare Disorders Strategy, released in 2024, also stipulates the need to provide health practitioners with more learning opportunities on rare disorders to improve their awareness and knowledge, and Rare Disorders NZ will be working closely with the Ministry to monitor progress on this priority.\u201d<\/p>\n A Givealittle page for Zavier and his family can be found at givealittle.co.nz\/cause\/zaviers-give-a-little<\/a>.<\/p>\n Danielle Simpson is walking 120km this month to raise money for Starship. <\/p>\nZavier Hull’s kidney function was at 8% last year.<\/p>\n