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The mother who is about to sell her family home, just so her four-year-old son can walk.

Milestones have a different meaning in the White-Kelly household. They’re not a fixed checklist, something that can be marked off against an ordinary child-rearing book or website.

To them, for their middle child, Ryan, milestones are something to be flexible about, to celebrate if and when they come. Something as simple as a nod of the head at 18 months. The ability to choose between one thing or the other. An attempt to raise food to his mouth. All major events for the NSW boy and his family.

Ryan, now aged four, lives with Spastic Quadriplegia Cerebral Palsy, a form of the condition which affects function of all four limbs and his body, including his speech. It means he has difficulty sitting unaided, feeding himself, suffers severe cramps in his legs and can’t walk.

Yet.

For Ryan has been selected for a life-altering surgery in the United States that could make that milestone achievable. It will cost his parents, Nadine Kelly and Matthew White, $140,000 including the operation, travel costs and a year of intensive rehabilitation.

“We’ll sell the house and anything that we’ve got to make it happen,” Nadine told Mamamia. “Money comes and goes, but if he can have a better quality of life, how can you say no?”

Image: Supplied.

There were no signs or symptoms.

Cerebral Palsy is a neurological disorder typically caused by brain damage that occurs in utero, or during or shortly after birth. In Ryan’s case it was the result of undiagnosed pre-eclampsia; a pregnancy complication characterised by high blood pressure.

There had been no warning signs or symptoms throughout the pregnancy, and it wasn’t picked up until a routine scan at 31 weeks. The clinic doctor assured it would likely be fine, but sent her to Royal Prince Alfred hospital for further tests just in case.

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Three hours later she underwent an emergency c-section.

“I sort of switched off [to cope],” she said. “Then I started sort of, not self loathing, but not believing in myself. I thought, 'my baby’s in distress and I should have known.' That that motherly instinct should have kicked in and it didn't.

”Even if it is out of your control, you still can't help but feel like I should've been able to do something."

Ryan spent 20 days in neonatal intensive care before he received the diagnosis.

“I was sitting by his bedside, as I always did. And then I remember the doctors walking over to me. Normally there was one, and there was a group,” Nadine said. “They all walked over together and grabbed some chairs, at which point alarm bells started ringing. I knew it wasn’t good.”

At that point, the severity of the condition, they said, was unclear. It could be that a single finger doesn’t work or he could require constant care.

“My mind was racing. It was trying to listen to everything they were saying because I didn't want to miss any vital information. But at the same time wondering, what does this mean for the future? Would he be able to play football? Are we going to be able to go on family holidays? What does this mean?” Nadine said. “And then it was lots of googling of scary stories. There aren’t many positive ones, because there is no cure.”

Image: Supplied.

Nadine and Matthew were told if he could sit independently by the time he was two years old he would likely later be able to walk on his own. The milestone came and went. They adjusted their yardstick.

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Today, Ryan still needs help to sit upright. He can talk, but his speech is unclear to those outside his close family and, medically speaking, he is classified as non-verbal.

There are few toys he can play and interact with. His legs cramp constantly, which makes it difficult for him to sleep. He needs help to eat.

“He wants to feed himself, so he can hold a piece of bread and occasionally get it to his mouth. But if he's really hungry it’s just so frustrating the time it takes to get it there, and if it misses, then that causes more frustration,” Nadine said. “Because he wants that independence, but his body is just not allowing him to do it.”

A new future.

The family moved from Sydney’s inner west to a cheaper, rural suburb in the Macarthur region of NSW so they could have a home equipped for Ryan and afford the appointments and crucial early intervention therapies. Nadine also quit her job in commercial real estate to get him there.

But it’s the surgery that offers Ryan the best hope of mobility, of some sense of independence, of normalcy.

It’s called SDR - Selective dorsal rhizotomy - and is performed by Dr TS Park at St Louis Hospital in the state of Missouri, in the US Midwest. If successful, it could permanently remove the spasticity in Ryan’s legs, easing his debilitating cramps and improving his chances of walking.

Ryan will then have to work extremely hard to build up the strength in his muscles that has always been hampered by his condition. The rehab schedule is extreme, and expensive. Physio every day plus two hours of stretching for the first three months and then three physio sessions a week and two hours of exercise every day for the next two years.

The operation is scheduled for December 13. And though they have received generous public donations, without further help it could mean uprooting their lives once again. Selling it all. Whatever it takes.

“My justification is that people spend more money than that on a car, spend more money than that on school fees. And this is going to change his life,” she said, fighting back tears. “Whatever we have to do, I'm going to make it happen.”

Because for the first time since receiving word Ryan had been accepted for surgery (which happened while she was on bed rest, awaiting the birth of her now four-month-old daughter), Nadine has a different outlook on her son's future, on another milestone in his life.

“I walked with him to daycare recently, past the local school that he’ll attend," she said, "and I looked into the playground and thought, ‘He’ll be alright in there now.

"'He’ll be included.'”

To help Ryan have this life-changing surgery, please donate whatever you can spare at Raising Ryan

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