‘People need to be kind’ – rare condition can’t hold Mason back

Jasmine Gundry had never heard of Treacher Collins syndrome until the day her son was born.

Mason was not breathing because of damaged airways, and he was immediately flown from Nelson to Wellington Hospital’s neonatal intensive care unit.

Jasmine’s doctor had been reading about Treacher Collins syndrome and told Jasmine he thought Mason might have it. Shortly afterwards, her baby was diagnosed with the rare genetic disorder that affects the development of the bones in the face. Hearing can be affected, as can breathing and eating.

However, children born with the condition typically have an average life expectancy and their intelligence is not affected.

Jasmine spent the entire first year of Mason’s life researching and learning about the condition while her son underwent countless surgeries.

Neither Jasmine nor her partner had Treacher Collins, making it a one in 50,000 chance that Mason would develop it in utero.

Mason, who is now 8 – he insists he is actually 81⁄ – had at least four

2 surgeries a year, has hearing aids and needs a feeding tube to eat.

This week he had another operation to implant cheekbones, take out some teeth, and assess his airways. Jasmine was hoping the surgery would be the last one before Christmas.

As the only child with Treacher Collins syndrome in Nelson, people do stare, Jasmine says. ‘‘It is mean and people need to be kind.’’

She wanted people to be aware that although Mason was born unique, he was no different to anyone else.

‘‘He is intellectual, smart, and he is so determined.

‘‘He is just a normal little boy missing a few things he didn’t get.’’

Jasmine, Mason and his younger sister, Sophie, live in the Brook and they have an amazing community surrounding them, Jasmine says. Mason goes to Nelson Central School.

Another big support for the family has been Ronald McDonald House in Wellington where they stay during Mason’s regular visits to the capital city for treatment.

In 2017, the family stayed at the house for 16 days over the Christmas period.

‘‘You are already so stressed out about having to travel and being away from home – the last thing you need is worrying where you are going to sleep. It is a huge weight off your shoulders.’’

When they are staying at the house opposite Wellington Hospital, they get free tickets to Wellington Zoo, a short drive away.

The two of them can spend the entire day there, with Mason’s favourite animal, giraffes, getting a lot of his attention.

This year, Ronald McDonald House has housed 63 families off-site owing to Covid bubble restrictions, while providing accommodation and practical support to almost 100 families. Donate to Ronald McDonald House at rmhsi.org.nz/shop/.