Ina Mills is sitting in her loungeroom rocking her son, Roki, in her arms, something she has been doing day and night for the past six months. “We are going through a tough time at the moment,” she says. “We are weaning Roki off morphine, which is really tough. We can’t make him comfortable. He wakes at 2 am and Dave and I take it in turns to hold him until Dave goes to his carpentry job at 6 am. Then I just hold him all day.”
Six-year-old Roki Mills has gone through more in his short life than most of us ever have to endure in a lifetime. Starved of oxygen during a traumatic birth, Roki was born with severe quadriplegic cerebral palsy, which saw him having up to 50 seizures a day and constant body spasms.
A bright day turns dark
Roki’s birth, on 25 June, 2013, was the “saddest and most terrifying moment of my life,” says Ina. That moment when a mother should be hearing the cries of her newborn was filled with an eerie silence.
“It was deafening. That fear for the life of my child and the sight of his limp body will forever be engrained in my mind.”
Although her firstborn, Ruby, was delivered by caesarean section, Ina’s second pregnancy was seamless and the midwives at her local hospital encouraged her to have a natural birth. “We were assured that I would be closely monitored the whole time,” says Ina.
But on the day of his birth, Ina’s waters hadn’t broken so a midwife broke them manually, inadvertently putting pressure on her Caesar scar. Ina had been given an epidural, so couldn’t feel anything, and the midwife failed to notice that her actions had caused an internal uterine rupture – and the baby’s heart rate was dropping at an alarming rate.
“She was very calm, so I wasn’t worried. She did everything by the book.”
When an obstetrician was finally called and he saw the monitor screen, he rushed Ina into theatre for a caesarean. “The baby’s head had gone through the rupture and into my intestines. When he was delivered he wasn’t breathing, and he didn’t have a pulse. There were so many people scurrying around the theatre while a midwife manually resuscitated him,” she says.
When he did draw breath, the baby “locked eyes on me”, says Ina. When she was asked what they were going to call him Ina replied, “Well, he’s had a rocky start to life so we had better call him Roki.”
Ina found out a few months later that Roki was without oxygen not for two minutes, as she had initially thought, but for 40 minutes. “It is a miracle that he survived.”
To prevent further brain damage, Roki was kept very cool for three days after his birth. “He was literally lying in the open, cold and alone. We could not hold him. He had a mass of wires and tubes attached to him.
“I spent my days rubbing his head and singing and talking to him. Those were dark days. I don’t remember much else than aching to pick him up to tell him how sorry I was.”
“The guilt was unbearable. It still is.”
After a week in hospital, Roki had an MRI scan which found significant damage in the area that controls gross motor movement… and doctors started mentioning cerebral palsy.
Difficult as this prognosis was to process, it wasn’t the last of the bad news. Weeks later, doctors told Roki’s parents that the MRI scan hadn’t pick up all the damage and his condition was more severe than predicted.
“He wouldn’t live long and he may never talk, suck, eat, walk or see… But we continued to believe that he would. The hardest thing to bear was the daily pain he suffered from his severe muscle spasms.”
With no treatment available for cerebral palsy or Roki’s muscle spasms in Australia, doctors’ advice to the Mills was to try physiotherapy and make him comfortable.
Ina and Dave, who live in Newport on Sydney’s northern beaches, started to do their own research. Ina’s vision impaired brother suggested they look at stem cell therapy, something he had been researching to discover if it could help him to see.
Ina’s enquiries led her to a Melbourne woman who had taken her son to India to see Dr Geeta Shroff for stem cell therapy.
After graduating in medicine from the University of Delhi, Dr Geeta Shroff specialised in gynaecology and obstetrics. In 1996 she set up an IVF practice, where she pioneered pre-morula stem cell (PMSC) technology. Since 2002, Dr Shroff has used this technology to treat over 1600 patients suffering from ‘incurable conditions’ such as spinal cord injury, diabetes, multiple sclerosis, Parkinson’s disease, cardiac conditions and cerebral palsy.
“We want this technology to be made available around the globe as a first line of therapy, so a patient can get a stem cell injection and never have to suffer the indignities of a progressively incurable disorder,” says Dr Shroff.
Although results depend on the condition’s degree of severity, some patients Dr Shroff has treated at Nutech MediWorld – a boutique medical facility she founded – have regained their motor functions, speech and cognition. Ina contacted Dr Shroff at Nutech to find out if their therapy could help Roki. After reviewing Roki’s medical history, she accepted him as a patient. Ina was told that the stem cell therapy could stimulate areas of Roki’s brain that had shut down. It was the glimmer of hope they’d been searching for.
But he would need several treatments, and each trip would cost the family around $40,000. This daunting sum only hardened Ina and Dave’s resolve to help their son, and they started the Roki Road fundraising campaign – something their local community rallied around.
So, in January 2014, at just seven months old, Roki travelled to India for stem cell therapy. “They talked very positively about Roki, a child who has a profound brain injury, but they stressed that this programme would be hard work,” says Ina.
For eight weeks Roki received stem cells several times a day through eye drops, ear drops, skin cream, inter-muscular injections and sometimes intravenous injections. In between, he was on a rigorous occupational and physiotherapy programme.
Within a few weeks, Roki started to turn his head when he was called, and his spasms and seizures started to ease.
“And when we got back to Sydney he started touching a toy. This from not being able to move at all!”
But there were also setbacks. While they were in India, Roki’s seizure medication ran out and the medication they bought from a pharmacy wasn’t the same. “He went into severe seizure episodes and was rushed by ambulance to hospital,” says Ina. “After that, he stopped turning his head.”
They returned home but shortly after disaster struck. He was hospitalised again, this time for a lung infection. “Because Roki was so frail, the antibiotics they gave him destroyed all his good gut bacteria and he got a fungal infection, which wiped out all the good work the stem cells had done.” They were back to square one.
To continue with the occupational and physiotherapy treatment Roki had been doing in India, they opted for the Glenn Doman Method – a US programme designed to progress cognitive, motor and speech development in children with special needs. But it would be time consuming and exhausting. “It was the hardest thing I’ve ever done in my life,” says Ina. “We had no family time.”
For two years, from seven in the morning till six at night, seven days a week, Ina with the help of volunteers would perform the tasks required in the Glenn Doman method, which included sound and tactile stimulation, teaching Roki to read, breathing drills and patterning exercises.
“The patterning exercises were for an hour twice a day. We would lie Roki on his tummy and one volunteer would move his leg and arm on one side of his body, while another would do the same on the other and I would move his head.” These repeated, patterned exercises were designed to get through to those parts of the brain that are damaged.
“Every five minutes throughout the day, we put a mask on Roki for his respiratory exercises. He would breathe deeply for one minute. In between time we gave him tactile stimulation, rubbing his body with all kinds of textures.”
In November 2014, when Roki was 18 months old, they took him back to India for his second hESC treatment. “This time his swallowing improved, and we were able to wean him off some of his seizure medication, but we didn’t see as much mobility as before.”
Back in Sydney, they continued with the occupational therapy. The respiratory exercises enlarged the surface of Roki’s lungs, allowing him to breathe more deeply and cough on his own, and he was following the reading cards with his eyes, but all the other work Ina and her volunteers had put in wasn’t amounting to much.
Just before his second birthday, the family made a third, and what they hoped would be the final trip to India. Roki’s older sister Ruby was three and Ina was pregnant. “That wasn’t a good trip. Roki was in hospital a couple of times with infections – the candida was still playing an underlying role. It took us years to get it back under control.”
However, the stem cell treatment saw him continue to grow and reduced the number of spasms and seizures.
When they got home, Ina noticed Roki was becoming very frail and started researching other types of occupational therapy. She discovered Advanced Biomechanical Rehabilitation (ABR), a therapy that provides mechanical stimulation to the fascia – the web of connective tissue that wraps around our muscles and internal organs and fuses them all together.
The goal with ABR is to release excessively tight and shortened fascia while simultaneously strengthening weakened and elongated fascia. Like muscles that become atrophied when not used, the fascia shrinks when the body doesn’t move.
Ina started ABR and continued only the reading and respiratory exercises from the Glenn Doman Method.
“ABR involves wrapping Roki in bandages and putting little gel packs on the hot spots, the joints where the fascia grows. I tap him there with a rubber osteo-bar to mimic the vibrations he would be getting if he could move.
“We saw huge improvements to his physical body from ABR. His chest expanded and he was no longer getting sick for weeks. When he got a cold he’d get over it in a couple of days. We could finally stop the respiratory exercises.”
Home by the beach
When Roki turned five, his gift to the family was a home by the beach. Using some of the insurance money awarded to Roki, the Mills’ bought an old weatherboard house surrounded by beautiful trees, which is close to the network of volunteers who help the family on a daily and weekly basis. “The house is in Roki’s name and can’t be used as equity against anything by us,” says Ina. It is currently being fitted out for Roki’s future needs.
While waiting for the work on the house to begin, they made a fourth trip to India, with six-year-old Ruby and two-year-old Rosie in tow. Because he was bigger and older than on previous trips, and the family could only stay for four weeks instead of eight, the doctors gave Roki a double dose of stem cells.
“It caused an enormous growth spurt. Which is great, we want him to grow. But when we returned home, his spasms increased and we had to find some kind of medication to comfort him without killing the stem cells.”
They opted for a slow-release morphine medication. Unfortunately, the chemicals that release the drug slowly became toxic in Roki’s fragile body. “It’s been a really tough six months weaning him off the morphine,” says Ina, rocking him in her arms to give him what comfort she can.
So has it all been worth it?
“Oh yes,” says Ina.
“Since the treatments, Roki has fewer than two seizures a day. He is growing, and he can swallow – although not enough to sustain him, so he is still tube fed.”
Dr Shroff concurs: “Roki has built some muscle mass, he doesn’t go into spasms as frequently, his respiratory system is stronger, and he is off his seizure medications.”
However, after each treatment, many of the improvements they see decrease after a few months. “Dr Geeta has always maintained that the best scenario for Roki is to have a stem cell injection every day. So we are looking into importing them.” Looking to the success of a child in the US, who receives Dr Shroff’s stem cell therapy via a year’s supply on dry ice, Ina remains positive despite it never having been done in Australia. The Australian Therapeutic Goods Administration office in Canberra has advised that it is possible to apply for the treatment, though there are no guarantees it will be approved.
When Ina has time, she plans to set up a website that will provide information about Roki’s experiences. “There was so little information about alternative therapies available for parents when Roki was diagnosed with cerebral palsy, and we want to give back,” she explains. “We want to pass on what we have learnt.”
In the meantime, the former kindergarten teacher sits holding her son in her loungeroom, waiting for the effects of the morphine medication to leave his body.
How does stem cell therapy work?
Once isolated and cultured, the stem cells are transplanted into patients by several routes, although mostly by injection. “These cells then home in on damaged areas where they repair and regenerate, following the body’s natural cues,” says Dr Shroff. “Regeneration is a slow process and treatment can take as long as 12 weeks. Follow up treatments may also be required.”
“Embryonic stem cells have maximum regenerative potential. They have the ability to form almost all of the 200-plus cell types of the body,” says Dr Shroff. “In contrast, adult stem cells are quite limited in their plasticity [adaptability].”
PMSCs are a unique class of embryonic stem cells. They differ from conventional human embryonic stem cells primarily in the stage of isolation (two to three days after the ovum is fertilised) and the methods used for culturing and expansion.
The cell lines used at Dr Shroff’s medical facility were derived from a single, fertilised ovum in the year 2000 from a regular IVF cycle. “There has been no need for repeated sources.”
DISCLAIMER: Dr Shroff has declined repeated requests for her work to be peer reviewed.
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