The Hodgkinson family say they're more grateful than words can say for the generosity of strangers who helped get their daughter Megan to St Louis, Missouri, for life-changing surgery.
Megan, 16, is the daughter of former Taupō man Craig Hodgkinson and the family, faced with raising $120,000 in just sevenmonths for Megan's surgery, was supported by networks in both Taupō and their home town of Hamilton in reaching the goal.
Megan was born eight weeks prematurely and at 18 months she was diagnosed with spastic diplegia cerebral palsy. It mostly affected her legs, and the spasticity (increased muscle tone) caused the muscles in her legs to grow increasingly stiff and tight. She could only walk on her toes and her feet were turned inwards. As Megan's legs stiffened and bent, her bones begin to deform and walking became impossible. She was able to walk with poles but as she hit her teens she needed a wheelchair.
Although her parents Craig and Melissa had repeatedly been told by New Zealand doctors that there was no help for her condition here or in Australia, they successfully applied to St Louis Children's Hospital and were accepted for selective dorsal rhizotomy surgery, which cuts the roots of the nerves sending defective messages to the person's limbs. In Megan's case, this was followed 10 days later by surgery to lengthen her tendons.
Megan had her first surgery in early May and following four weeks of post-op rehab, the family returned home in June, where her rehabilitation has continued. She will need intensive rehabilitation for the next three to five years and will have to maintain it all her life.
It has been a stressful, emotional and physically and mentally draining time but her mother Melissa says all the pain and tears were worth it when last weekend Megan stood up straight, unaided, for the first time in her life.
"She could actually stand and have a conversation with somebody without holding onto a walking pole or a cane. It means she's got balance that she never had before and that was massive, it was quite surreal to look at."
Megan is also able to walk around the house unaided, with care, and can walk on a treadmill for up to 20 minutes but wears knee immobilisers and splints to straighten her hamstrings and gastrocnemius muscles. She uses a walker at school and out in the community. Melissa says the aim is to get Megan climbing steps by Christmas.
While the two surgeries in St Louis were tough, made worse by Megan suffering an allergic reaction to one of the drugs, Melissa says she noticed as soon as Megan came out of the first operation that her legs were straighter. She is having to unlearn the habits she learned as a child, build up her core strength and muscles and learn to walk properly from heel to toe.
"She had some very dark days," says Melissa of the hospital stay. "It was very, very hard ... but when you see her face when she does something that she's never been able to do before, she brightens up.
"She has to re-write her brain and she has to physically look at her feet and consciously think about putting her heels down. She's having to grow muscles in her calves and her thighs and you can see that."
By the end of last year Megan Hodgkinson's worsening cerebral palsy had confined her to a wheelchair.
Megan is working with a personal trainer up to five times a week and in October she will have a week of therapy in Hamilton with Walk This Way, a UK-based organisation that runs therapy specifically for SDR patients.
Melissa says she is incredibly grateful to everybody.
"There's no words to explain how a parent can feel, how people can be that generous and that caring because there's just no way we could do it without everybody helping us."
Melissa says it shows others with similar conditions could benefit too.
"If I achieve nothing else in my life, if I leave this earth knowing she can walk then we've achieved way beyond what we thought we could ever do."
