Meet Mika
Hi, we’re Bayly and Ben — parents from Whakatū Nelson, and the founders of Cure As One.
Our son, Mika Maire Conning, was born in June 2024. From his very first weeks, he showed us what extraordinary strength looked like. After failing his newborn hearing screening and undergoing a series of tests, Mika was diagnosed at around three months old with ECHS1 Deficiency — a rare, devastating, and currently incurable genetic condition.
From the moment we received that diagnosis, we knew we had to do something. Not just for Mika, but for every baby and child around the world facing the same impossible odds.
Mika was put on a special formula to limit his valine intake, and for a time, he thrived. He was completely oblivious to the extra care and attention that surrounded his every day — and in his own way, he was joyful, resilient, and deeply, deeply loved.
True to his name and the whakataukī that guided us:
“E kore au e ngāwhera, he maire tū wao, mā te toki e tua.” — A maire tree in the forest will not give way — only by means of an adze can it be felled.
Mika fought with courage right to the very end. He passed peacefully in our arms at home on 22 March 2026, surrounded by love.
His life was short, but it was meaningful. He changed us. He changed everyone who knew him.
Cure As One was born out of our love for Mika. It continues because of him.
His legacy lives on in every dollar raised and every step of research funded — including our new partnership with Victoria University of Wellington to fund early-stage treatment research at the Ferrier Research Institute. We will never stop searching for a way to ensure no other family has to walk this road without hope.
Moe mai rā, e te tau. Moe mai rā, e te aroha. Kia au tō moe.
Rest now, our beloved. Rest in love. Sleep peacefully.