Ryan’s resilience and determination prove doctors wrong 

By Melanie Louden 

After a difficult start to life Ryan Nikoro is letting everyone know that Cerebral Palsy isn’t holding him back. 

Tracey Nikoro clearly remembers the day she and husband Junior told their youngest son about his journey into this world.  

It was a tough conversation prompted by a television news item that mentioned abortion.

Tracey and Junior explained what abortion was to Ryan,  then aged 7, and what it could have meant for him based on a suggestion from doctors.  

His words at the end of the conversation will always stick with the proud parents. 

“He had tears in his eyes, and he said, ‘thank you for born-ing me’,” Tracey says. 

Ryan, now 10, is the face of the Cerebral Palsy Society’s annual fundraising and awareness campaign, Be Green & Be Seen | Kia Kākāriki, Kia Kitea. 

He and his family are sharing their story to help raise awareness of the impact of living with Cerebral Palsy.  

Among other things, the campaign raises vital funds for the Society’s e-card funding programme. The getProgramme helps members access products and services that keep them included and participating in society, as well as improving their quality of life and wellbeing.  

Tracey says her and Junior found out at their first scan that they were pregnant with twins and concern was raised immediately because one of the twins was extremely small,” Tracey says. 

During the pregnancy the Auckland couple were told that the smallest twin, Ryan, only had one functioning kidney and that there was a blockage, or deformity in the urethra. The kidney issues were most likely stunting Ryan’s growth.  

Tracey says Ryan wasn’t expected to survive pregnancy, or if he was born alive, he would be hooked up to machines for the rest of, what was expected to be, a short life. 

“He would be existing and not much more,” Tracey says.  

At 19 weeks, Tracey and Junior were given the option to terminate Ryan. In fact, says Tracey, “it was recommended”. 

“Immediately, Junior and I, in less than a split second, said ‘no, we will let him decide….Ryan will decide’.”  

Tracey developed pre-eclampsia and was hospitalised at around 23 weeks, where she remained until the twins were born at 35 weeks, via caesarean section. 

Tamati was born first, weighing 2.7kg.  

Ryan weighed just 1kg and was in the Neonatal Intensive Care Unit (NICU) for four weeks. Doctors diagnosed him with Cerebral Palsy within his first week.  

He has hypotonic quadriplegic Cerebral Palsy, GMFCS Level 2, which affects all his limbs.  

Doctors didn’t expect Ryan, who also has an older brother named Vincent, 13, to be doing many of the things he is now doing.  

“We didn’t know if Ryan would ever open his hands or walk. But Ryan being Ryan put in 200% effort and he did it – taking his first steps at the age of 2.”  

Tracey puts a large part of his progress down to help from a paediatric occupational therapist named Roz, saying that “without her help, Ryan’s motor skills and our knowledge of how we could help Ryan would not be at the same place they are today”. 

Fatigue is a big part of Ryan’s daily life and something he is learning to manage throughout his school day.  

Like many people with Cerebral Palsy, Ryan has vision and hearing loss, and epilepsy brings on seizures within the first hour of going to sleep. 

Fatigue also means he is often too tired to chew, so at the end of the day he eats soft, easy to swallow meals and generally needs at bit more assistance and empathy. 

Splints have made an amazing difference to Ryan’s life – especially as he is such an active child. Prior to receiving splints, he would frequently fall and hit his head. 

“Since getting the splints his walking and balance, and ability to walk on different surfaces, is a whole other world,” Tracey says.  

Ryan needs help with remembering to carry out everyday activities, and with tasks that require fine motor skills such as locks, door handles, zips, buttons and laces.  

Tracey has found that the Society’s getThis&That funding, part of the e-card programme, has been useful for helping Ryan learn to carry out tasks around the house – he is currently working on mastering a Good Grips can opener which he uses when he helps with cooking. 

Despite the challenges Ryan faces, you’ll find a young man full of “determination and resilience”, a young man who has found his happy place in sport. 

“When I’m older I want to be a Paralympian in athletics or swimming,” Ryan says.  

In his 10 years, Ryan has tried his hand at rugby, basketball, touch, athletics, jiu jitsu, BMX and hip hop.

Swimming lessons have been funded by the getPhysical funding available on his e-card.  

Ryan has been to the Halberg Games three times and absolutely loves it. 

“It’s fun. I like seeing people with disabilities try their best” says Ryan, who represents Disability Sport Auckland at the games. 

Tracey says the first time he went to the Halberg Games “his eyes lit up”.  

“He wasn’t sure what to expect. But he had the biggest smile. He was nervous. But when he saw the people there, he said, ‘mum, they are all just like me’.” 

Ryan is excited to be part of the Cerebral Society’s Be Green & Be Seen | Kia Kākāriki, Kia Kitea campaign, and the family is looking forward to getting involved in the #beACTIVE aspect of the campaign.  

They love to get out and about, and were quick to start coming up with ideas for a physical challenge they could all take part in.  

“We’ve settled on a step challenge day where we will hold an event with as many friends and family as possible – the more steps the bigger the donation! 

“We’re looking forward to getting out there, raising awareness and some funds for the Cerebral Palsy Society, we are so grateful for the opportunities and guidance they provide us and other families with Cerebral Palsy,” Tracey says. 

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Be Green & Be Seen is the Cerebral Palsy Society of NZ’s annual awareness and fundraising campaign. You can find out all about the campaign here.  

 

Make a Be Green & Be Seen donation on our Givealittle page today

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#beACTIVE with us