Lots of love for Larson
There is ‘no day but today’. That is how two-year-old Larson Versteegan lives his life after being diagnosed with severe congenital neutropenia.
The diagnosis means Larson does not produce neutrophils in his bone marrow to fight bacteria.
Larson’s mum, Erin Boutcher and dad, Chris Versteegan named Larson after the musical ‘Rent’ composed and written by Jonathan Larson.
Jonathon Larson’s motto in life was ‘no day but today’ and a feature song of the musical contains the lyrics ‘measure in love’.
“No day but today is how our little boy lives his life,” Miss Boutcher said.
“He is remarkable considering what he has been through.”
Horsham locals created a Gofundme account, ‘Measure in Love for Larson’ to assist the family and bone marrow research.
This has evolved into a ‘Pop-up Piano Bar’ to raise money for Maddie Riewoldt’s Vision – the only Australian charity that includes severe congenital neutropenia.
Miss Boutcher said there was no cure for Larson’s condition.
“Any time he gets an infection or a fever, he is on IV antibiotics,” she said.
“There is a drug called GCSF that he didn’t respond to, so the only ultimate cure is a bone marrow transplant.
“He was meant to be having a transplant soon, but it has been put on hold, for now, which is a good thing because his doctors will do some further investigation.
“There’s a one-in-a-million chance of having this condition and Larson is rarer because there is no genetic link that appears to have caused it.”
Family friend Loucas Vettos, known to Larson as Uncle Luca, is co-ordinating the pop-up piano bar and fundraising efforts.
“We had to do something to show our support,” he said.
“We started a Gofundme for Erin, Chris and Larson because of the timeline for the transplant that was originally given. They were expected to be away from home for a long time.
“Everyone has been so responsive and really giving, which has been amazing.
“Money raised from the pop-up piano bar was originally going to Erin and Chris, but they have decided the community has been so great they want to give back to someone or something to pass it forward.
“Neutropenia is extremely underfunded and under-researched, so while the Gofundme is brilliant and hitting the mark for what they need for their time in Melbourne when Larson needs a transplant, they’re giving back to Maddie’s Vision.”
Miss Boutcher said the family had been overwhelmed by the community’s support.
“There’s been amazing response for our little boy and we are so grateful – Horsham is a really wonderful town,” she said.
“Research is key for Larson now and that is what Maddie’s Vision supports, so we wanted to dedicate the event to that. Funds go towards research and making bone marrow transplants safer, because they are life-threatening.
“It’s not what people think. A bone marrow transplant means chemotherapy and also medication for the rest of your life.”
“It alters your life forever; it is not an easy answer, so that’s why we appreciate the doctors at the Royal Children’s Hospital doing further tests on Larson.
“We know other kids who go to the Royal Children’s Hospital and have their own battles, so hopefully we can keep the fundraiser going and give back to the Horsham community.”
Larson was first diagnosed with severe congenital neutropenia after a stye, caused by bacterial infection of the gland at the base of an eyelash, became infected.
He now receives IV antibiotics when he spikes a fever or there is a possibility he has an infection.
A bone marrow transplant would involve six to eight weeks of isolation and months of recovery in Melbourne.
‘We go to Melbourne to talk about my bone marrow’, Larson says. “He doesn’t know the severity of it. An infection is life-threatening for him because his body cannot fight it,” Miss Boutcher said.
“Some children may grow out of it and that’s my miracle – that he never has to have this – but unfortunately a bone marrow transplant is the only outcome where it is fixed, which is drastic, but if he needs it that’s what he needs.”
Miss Boutcher said from the outside, people would not know Larson had a medical condition.
“He is an isolated two-year-old because he can’t go to childcare or swimming lessons and he spends a lot of time in hospital,” she said.
“But he is a happy kid and always willing to stop and talk to people.”
The pop-up piano bar is at Horsham Football Netball Clubrooms at Horsham City Oval on February 18.
Mr Vettos said people were volunteering their time to take care of food, decorations and performances.
“Everyone is so excited that it is going to a good cause,” he said.
“The Horsham Football Netball Club has been really great helping us out as much as we need with the venue.
“We have 22 performers and five accompanists on piano and guitar. We had 160 tickets and they were sold out within three days.
“People were happy to work around and make themselves available, some people are coming to sing one song or four songs or do a duet.”
Mr Vettos said because doctors were not rushing into a transplant for Larson, it was a good time to donate to research.
“Unfortunately, bone marrow is not researched as much as other diseases, so it is a way to give back and we’re aiming to keep costs as minimal as possible so we can give as much to Maddie’s Vision as we can,” he said.
“This isn’t just about getting people up to sing and having a good time, there will be information about Larson’s story and Maddie’s Vision so that people know there’s a reason behind what we’re doing.
“We’re very lucky to live in a giving town, and also have friends who are very gifted and willing to give their time and their services to get this going – it’s going to be a really good night.
“Someone said to me recently, ‘the only way to have good friends is by being a good friend’ and I think that has sparked something here about why people want to get behind Erin and Chris to support them. “Larson is such a special kid.” Mr Vettos said he hoped there would be a ripple effect from this event to be able to donate to other families or charities in the future.
“Hopefully we have scope down the track to help other Wimmera families who are going through hard times, or other charities that will support them, because it’s sad when you think of how many people are in need and not everyone has lots of support,” he said.
“I think if this turns from something to help one family to help even more families, I think we will be pretty chuffed with that.”
‘Measure in Love for Larson’ Gofundme can be found online at www. gofundme.com/f/measure-in-love-forlarson