Waiuku parents' incredible fight to give their son with cerebral palsy a chance to walk

It took three years to have four-year-old Reid, now his parents are giving everything to help their son walk.
It took three years to have four-year-old Reid, now his parents are giving everything to help their son walk. Photo credit: Supplied / Emma Lovett.

First-time mum Emma Lovett's water breaking just 24 weeks into gestation was the first sign that something was out of the ordinary with the baby son she was carrying.

Terrified of losing their unborn child after trying to get pregnant for three years, Reid's birth was nothing short of a miracle 28 weeks emergency C-section, weighing just 1405 grams.

Emma stayed in and out hospital for the months up to his due date when doctors delivered the news that their little boy would most likely have cerebral palsy.

Despite the initial shock receiving news "no parent expects", Emma believed somewhere inside that everything was going to be okay.

As soon as the family got home they began to monitor his movements and motor skills and joined support groups on social media while researching his condition.

Weighing just 1405 grams, Reid was nothing short of a miracle.
Weighing just 1405 grams, Reid was nothing short of a miracle. Photo credit: Emma Lovett.

She soon discovered a lack of support for kids with Reid's condition. Because cerebral palsy receives little to no funding, it has cost his parents tens of thousands of dollars to give him the physical therapy he needs for his best chances at walking.

"When we chose to become parents - that is what we signed up for," Emma told Newshub.

Reid requires daily physio at home. Ideally, Emma would like to be able to do more water therapy with him and have a hydrotherapy pool at home, but to get one at their home costs money prioritised for intensive rehabilitation.

Emma says she and her husband Steve are determined to take up every option to help Reid walk, and have travelled to Australia a number of times to take up opportunities there.

Reid has been able to take a few steps on his own with hard work but an operation that is currently unavailable in New Zealand, selective dorsal rhizotomy (SDR), would help him walk independently and with assistance for long-distance.

To come up with the money, it's been 98 percent fundraising. While both working, Emma and Steve have applied for loans, tried to remortgage their home but rely a lot on help from other people.

She wants to see the Government step up and offer funding to take some of the stress away from families.

The family have been dedicated to finding Reid the best physical therapy possible.
The family have been dedicated to finding Reid the best physical therapy possible. Photo credit: Emma Lovett.

"One of the alarming statistics for parents of special needs kids is 80 percent of parents separate - that is another giant stress on kids and families regardless of the special needs," she says.

"Our kids deserve better, the families that face these challenges every day deserve better and shouldn't have to spend so much precious time fighting systems to get the best for their kids."

Emma would like to see more trained therapists available and accessible with the right equipment and environment or give families the funds to arrange private therapy themselves regardless of whether they have had surgery or not if they have been diagnosed with a physical condition.

Cognitively, Reid is very fortunate. Emma says he is quite smart.

"He will challenge you if something's not right, generally a really happy kid."

She says she is 1000 percent committed to give him the best chance at walking. On June 5 she was faced with an unimaginable challenge.

While sitting in the family car with her husband before work she received an email which could change her son Reid's life.

The determined mother had stopped at nothing yet to give her child with cerebral palsy the best chance at walking on his own.

Due to a cancellation at the St Louis Children Hospital in Missouri, that had accepted Reid for neurosurgery to help the four-year-old's brain communicate with the muscles and reduce the tightness in his legs, a spot was now available in August.

Accepting it meant the family had to pay the full cost of surgery - $88,000 - by June 23, just two weeks from receiving the email. She and husband Steve had 48 hours to decide if they could do it.

Emma says her and Steve will continue to fundraise to give Reid the best chance at walking independently.
Emma says her and Steve will continue to fundraise to give Reid the best chance at walking independently. Photo credit: Emma Lovett.

"It was at first disheartening as we knew we didn't have the money, but yet we had an opportunity for Reid," Emma told Newshub.

"We were both silent for a while thinking we would have to turn it down. Then we put a message out to our friends and family to say we received a cancellation date - they all told us to do it, they would help make it happen somehow."

Emma's gut said go for it. Taking the appointment almost a year earlier than planned meant Reid had a better chance at recovery and he would not have to delay school.

The Lovetts had eight weeks to come up another $60,000 just to get them there after raising $50,000 for the surgery they were expecting next year.

In addition to the surgery costs, they need to cover flights, accommodation and living costs around $25,000.

"We really didn't know if we could do it - it was scary," Emma said. "We had some very kind people lend us some of their life savings short-term just to have it paid so it wasn't cancelled, but that was never our money and always had to go straight back to them.

"It's not going to make him walk, it's going to make learning how to walk much, much easier for him."

The family has been "blown away" by the "amazing" generosity that they've felt from the community around them. But it's no longer just about Reid.

The Waiuku mum says she is 1000 percent committed to give him the best chance at walking.
The Waiuku mum says she is 1000 percent committed to give him the best chance at walking. Photo credit: Emma Lovett.

Through his journey, Emma has been able to see a gap in the health system and wants services and surgeries to be available in New Zealand for all children with cerebral palsy.

"Steps for Reid is not the end of the road for us, there are so many kids in New Zealand who need cost-effective quality physical therapy to help them reach their full potential of strength and movement," Emma says.

"I'm no expert, but the earlier we give children access this kind of treatment and opportunity the more aware of their bodies they will be and long term they may have better." In the UK, public funding is available for children which lowers the surgeries they need later in life.

"The more you put in with kids when they're young, the better outcome as adults. There needs to be a change.

"It's not about personal recognition or gain, it's about celebrating achievements that people didn't think they were capable of."

Newshub.

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