Special day with their special boy
Son’s rare disease speeds family’s wedding
Nathan and Fran Jones planned their wedding day in just six weeks with one wish in mind – to have their three young children there, happy and healthy.
That may not be much of an ask for some but the Joneses planned their big day quickly, knowing time is precious with their baby boy Nash, who has a rare disease and may end up dying young.
And on Saturday the Taranaki family’s wish came true – a day with their closest friends and family, where their smiling baby Nash came down the aisle on his tricycle with his parents’ wedding rings in the back.
‘‘He had a massive smile, everyone said that he looked amazing,’’ Fran said. ‘‘It was such a beautiful day.’’
Nash has Lesch-Nyhan Syndrome, caused by a mutation of genes, which can result in kidney issues, physical and mental disabilities, and potentially bring on self-mutilating behaviours – something no other disease does.
The 15-month-old was diagnosed in March this year. He is the only person in New Zealand with the syndrome and has been in and out of hospital with kidney issues. He’s yet to develop any of the harmful behaviour – which could be anything from trying to bite his fingers, tongue and lips off as well as do things like throwing his head against the wall or even attempting to gouge his eyes out – and that’s the Joneses biggest fear.
Which is why they had an appointment booked a week ago to discuss Nash’s chances of having a risky stem cell transplant that could prevent the behaviour.
‘‘The whole reason that we got married and set the date for six weeks’ time was because they reckon between a 10 and 20 per cent chance that he wouldn’t make it through the stem cell transplant,’’ Fran said. ‘‘It was like we need to get married and have him there with us if there’s a chance he might not make it – we have to make memories now.’’
And that they did – Nash was joined by his siblings Jess Bielski-Jones, 9, and Quinn Jones, 21⁄2, and around 120 guests.
‘‘It was really amazing planning a wedding six weeks out and there was only like two people that couldn’t come,’’ Fran said.
Two days after the wedding the parents were told that it would be too risky to let Nash undergo the surgery. But they said they were glad they went ahead.
Fran said they received donations of flowers, decorations, vehicles and time from a dressmaker, hair and makeup artists, a celebrant and a photographer out of sheer kindness on the day. They asked attendees to pay $25 for their food as a wedding present and put on a bar tab themselves.
The Joneses not only wanted to bring the family together before what could be a big risky step, it was a celebration too.
‘‘We wanted to celebrate where we’ve got to in the last year as well and celebrate our love and how strong we are and how much we have grown together as well to come through this because it’s been a pretty tough year – still is.’’
The family have a Givealittle page to raise funds for Nash’s medical expenses.