Dancer's surgery hope

Spinning in seemingly effortless circles, her dark blonde hair smoothed back in a careful bun, Tyler Barnett is in her happy place.

Her smile is one of pure joy, her spark inspiring as she taps through a complicated tap routine, watching herself in her mind’s eye from her Wairau Hospital bed.

Battling a series of life-threatening conditions Tyler is currently unable to dance and virtually bed bound. With her health declining, the 16-year-old is preparing for her biggest challenge yet.

The determination and grit that has seen her dance and teach through pain, exhaustion and even dislocation is now key for Tyler as she prepares for life-saving surgery abroad.

It is a challenge the tenacious young woman is ready for, says proud mum Lorissa Barnett.

“Her pain tolerance is quite high and often people don’t realise just how much pain she is in… she masks it quite well

“When she’s dancing, she’s in her happy place and I want that for her again.”

Diagnosed with Elhers-Danlos Syndrome hypermobility type (hEDS), Abdominal Vascular Compression Syndromes (AVCS) and Postural Orthostatic Tachycardia Syndrome (POTS) the teen is in severe pain, and fed through a Jejunostomy Tube.

Surgery in Düsseldorf to fix the AVCS is Tyler’s only option as it isn’t performed in the Southern Hemisphere. The surgery is very new, and the pioneering Surgeon is German.

Having spent more than a month in Wairau Hospital, she will fly out to Germany for open, major abdominal surgery in March.

A transfer to Auckland’s Starship Children’s Hospital first is also a possibility.

Tyler developed severe sepsis earlier in the month. This makes her family very nervous about keeping Tyler well during the journey.

But determined not to let a serious infection and a lengthy hospital stay spoil an important family milestone, Tyler rallied enough to accompany her younger twin sisters Milly and Lola, 13, for part of one of their first days at Marlborough Girls’ College.

As a close-knit family, the last three years since diagnosis have been tough on everyone.

Lorissa is at the hospital everyday while dad Jason keeps the family business on track. Her sisters visit often as do her older brothers, and their families.

Tyler’s strength and fortitude have proven invaluable in helping the family through some dark days, Lorissa says.

“She’s an eclectic mix of competitive, artistic and intellect. She’s an old soul.

“Tyler loves to learn, to know everything. If she hears a new term, she’ll be on phone researching and deep-diving until she can tell you all about it.

“She’s got a great sense of humour and will have frank and open conversations about anything.”

Tyler’s dance teacher Carol Knox at the Marlborough Tap Studio has formed a close bond with Tyler and her family.

She says the “extremely talented” dancer has shown resilience beyond her years, while also dedicating her time to helping younger dancers.

“Her resilience is amazing,” Carol smiles. “She’s totally crazy and knows no boundaries with what she’ll say.

“Sometimes, it’s like she’s older than me and I’ve been teaching for 50 years.”

A Givealittle page has been set up to raise money to help with costs, flights, accommodation and living expenses while in Germany.

Carol is also organising a special dance showcase on February with dancers from the Marlborough Tap Studio, Dance on Grove and MAD as well as Impact from Nelson set to perform.

Turn up for Tyler will be held on Saturday 24 February at Marlborough Girls’ College from 6-8pm.

Lorissa says the support from everyone, including the medical team at Wairau caring for Tyler has been wonderful.

‘We are just so grateful.

“Tyler has so much potential. She’s going to be a surgeon” she smiles, “a tap-dancing surgeon,” Carol adds, chuckling..

“We want her to be out of pain, to be able to do what she loves again by the end of the year.”

To find out more about the recital and to buy tickets visit https://www.eventfinda.co.nz/2024/turn-up-for-tyler-fundraising-event/blenheim

To donate visit https://givealittle.co.nz/cause/our-tap-dance-queen-needs-life-saving-surgery