Waihi child needs life-changing surgery. Made with funding from NZ On Air.
Ocean Stephen dreams of one day being able to walk, dance and jump high - just like other girls her age.
But unlike most other girls her age, the 3-year-old needs $150,000 to fulfil that dream.
Her Waihi mother is desperately trying to raise this money, so Ocean can have life-changing surgery in the US in July.
At age 14 months, Ocean was diagnosed with spastic diplegia cerebral palsy – a diagnosis her single mother, 36-year-old Kristen Waite, describes as heart-wrenching.
The condition causes stiffness and spasticity in Ocean's leg muscles, making walking and standing for long difficult and often painful.
Ocean can only stand and walk short distances using a walking frame.
Without the walker or help to stand, the youngster has to use her arms to pull herself up to a standing position or crawl along the floor pulling her legs behind her.
"As Ocean's body grows the spasticity is getting rapidly worse and prevents the bones from forming and growing, so starts to cause deformities in the joints," Waite says.
"Ocean's right leg now rotates inwards, which affects her hips. It's only going to get worse unless she has surgery," Waite says.
Back on that fateful day that Waite learned of her daughter's condition; a paediatrician said her daughter might never walk or talk.
Ocean Stephen, 3, has cerebral palsy and needs $150,000 for life-saving surgery in the US, and to cover the cost of post-operative intensive therapy. Photo / John Borren
''My heart sank,'' says Waite, describing it as the worst news any parent could get.
But "after a good week of sobbing", she began to ask more questions and research therapy options, which eventually led her to US paediatric neurosurgeon Dr Tae Sung Park.
Ocean has been accepted as a candidate for his selective dorsal rhizotomy treatment in St Louis, Missouri.
The procedure involves opening up the lower vertebrae in Ocean's spine and testing the nerve fibres to establish which one is sending the wrong message to her body.
Park will then cut some of the sensory nerve fibres which come from the muscles and enter the spinal cord, permanently removing the spasticity.
Ocean's surgery will include a three-week compulsory intensive post-op therapy and will be like a "reset" for the girl, who will have to learn to use her leg muscles again.
Waite and her daughter plan to fly to the US on July 25. The procedure is scheduled for July 31, and the pair hope to return home again on August 27.
Eventually, after intensive physiotherapy, Ocean should be able to walk by herself.
Waite fears that if Ocean does not have the surgery now, she may need hip surgery and end up in a wheelchair.
Waite needs to raise between $85,000 to $90,000 to pay for the surgery by June 15 and needed another $4500-$5000 for food, accommodation and transport while in Missouri.
Kristen Waite with her daughter Ocean Stephen. Photo / John Borren
Missing this payment deadline would mean another 10 months on the waiting list and further deterioration, she said.
Another $50,000 is needed to pay for the five-days-a-week intensive post-operation therapies which Ocean will also need for the next two years, Waite said.
Waite has so far raised $68,000 thanks to a Givealittle page and fantastic support from the Waihi community, which has come on board with fundraising events.
That includes local businesses and schools selling weekly raffles and holding daily auctions, the Gilmour Lake Fair, and a stall at the Splore Music Festival in Auckland.
The Waihi Inspired Kindy which Ocean attends recently raised $700 by holding a cafe and bake sale, and OceanaGold has offered to pay for the airfares.
The Waihi Memorial RSA is also holding a trivial pursuit fundraiser on June 9.
"Fundraising for Ocean's surgery has taken over my life 24/7, and there is not much time for much … As a mother, I'm prepared to do anything to improve my daughter's life."
Dr Park who visited some of his Kiwi patients in February told a Seven Sharp reporter that this was the only surgery that would remove the spasticity permanently.
"If the patient can walk independently after the surgery they can maintain their independence. The medical evidence for this surgery is very strong, and improvements and the benefits can be sustained," he said.
Ocean goes to kindergarten two mornings a week, and she and her mother also travel to Hamilton once a week for an hour-long government-funded physio session.
"Ocean tells me she wants to be able to dance and jump high, and I believe in the power of positive thinking,'' Waite says.
Ocean Stephen, 3, eating Rice Bubbles at the kitchen table. Photo / John Borren
"With the community's help I will take Ocean to the States in July, and she will have the surgery.
"To watch my daughter deteriorate like this in the past six months has been really terrible and scary - but having Dr Park perform this surgery will change Ocean's life forever."
She's a real little battler
Ocean Stephen eagerly drags herself up on to a kitchen chair and holds an empty bowl.
"More Rice Bubbles mummy," the delightful youngster pleads with her mum.
Her mother, Kristen Waite, smiles and looks at me.
''We've recently discovered Rice Bubbles, and they are now Ocean's favourite food."
We have not long arrived at the Waihi home where Waite and Ocean live when we get a snapshot of a little girl who seems happy but faces a huge hurdle.
Waite, standing in the small kitchen, tells me if she let her Ocean would eat Rice Bubbles for every meal.
As we discuss the desperate fight to raise the thousands needed for the surgery, I point to multi-coloured thermometer drawn on a chalkboard nearby.
Waite is "a bit embarrassed" because the drawing is not her best effort. The thermometer is how Waite keeps a tally of the amount raised as the June 15 surgery payment deadline looms, and Ocean has added her artwork to it.
3-year-old Ocean Stephen needs $150,000 to cover surgery and therapy. Photo / John Borren
As we move into the small intimate lounge we see a Power Plate treadmill which Ocean uses to keep her muscles working and as strong as possible, her mother says.
It's fulltime job caring for her little girl, who despite the physical limitations is outgoing and loving towards everyone she meets and shows lots of spunk, Waite says.
The close bond between mother and daughter is evident as the pair lean in towards each other for a cuddle, and Ocean with her arm around Waite's neck reminds us "this is my mummy".
"Ocean is an incredibly beautiful, vibrant, cheeky, happy, playful, outgoing little girl, and a real little battler," Waite says.
"It's going to be hard seeing her go through the surgery, but the end result is going to be worth it for both of us.
''Ocean inspires me every single day with her strength, determination and she has such a kind, loving heart, and bravely faces her daily challenges with such spirit."
The plucky little girl with a beaming smile immediately leans in towards our chief photographer John Borren to give him a big hug.
She does the same with our colleague Jaden McLeod who recorded Ocean on video, and me, before waving us goodbye.
How you can help:
Go to Ocean's givealittle page https://givealittle.co.nz/cause/ourjourneytosdr. and/or attend the Waihi Memorial RSA's trivial pursuit fundraiser on June 9 from 5pm to 7.30pm. Tickets cost $5 each. Call 07 863 8806.
What is spastic diplegia cerebral palsy:
A condition which manifests during infancy and early childhood, and affects the legs and arms making them stiff and contracted. Legs are generally affected more than the arms. But both upper and lower limbs can equally be affected in some cases, depending on how severe the spastic diplegia is. Makes crawling and walking difficult and often children will walk with a wide scissor-type gait. Some children may not be able to walk at all. It is usually caused by brain damage, which happens before, during or shortly after birth.
