Meet Mika

Hi, we’re Bayly and Ben – young parents who live in Whakatū Nelson and we started Cure ECHS1D Aotearoa to help our son, Mika, and others with ECHS1 deficiency.

Mika (pronounced Mee-ka), was born in June 2024. After failing his newborn hearing screening test, he was diagnosed with congenital hearing loss in the high and mid frequencies at just one month old. 

After further investigation and a number of tests, when Mika was around three months old we eventually learned he has a rare, often fatal metabolic condition called ECHS1 deficiency that affects the body’s ability to break down a certain protein called valine.

Mika has been put on a special formula that limits his valine intake. Ever since the change in his diet, he has had more energy and is a much happier baby, giving his mum and dad a lot more smiles and giggles. 

As parents, our goals are for Mika to continue putting on weight, increase his low muscle tone, and to stay as healthy as possible to prevent any major medical events – while getting to experience all the wonderful parts of life.  

Mika is completely oblivious to the extra care and attention he has had in his life so far, but as his parents we are incredibly grateful for the specialist, doctors, nurses, therapists and support staff at Nelson Hospital and Starship Hospital.

We will never stop searching for a way to give our baby boy a happy, healthy life. We want to give him and others with this disease the best chance possible – but to do that, we need your help.