Many readers will remember Roki Mills, the local Newport baby (and his family) who captured our hearts.
Roki, now 11, has had one of the rockiest starts to life (hence his name), suffering from a lack of oxygen at birth, resulting in permanent injuries. His condition has severely limited his mobility and development.
“I had a complete rupture of a uterine scar from a previous caesarean,” says his mum, Ina of the traumatic birth. Roki “suffered from a lack of oxygen for over 40 minutes. As a result, he has quadriplegic cerebral palsy.”
His wonderful parents, Ina and David Mills have reached out to the community over the years to help raise money for Roki’s life-changing operations.
To say this family is resilient is an understatement.
Over the last 11 years, the family have raised thousands of dollars, endured a five-year court case against NSW Health, travelled overseas for stem-cell therapy, and attended countless hospital visits, medical appointments and physical therapy sessions. The family were also defrauded of $7000 when they sold a diamond ring to help raise money for Roki to travel to India to undergo stem cell operations (thankfully, the fraudster was jailed and the Mills family got their ring back).
Despite the challenges, Ina has remained determined to provide her son with the best possible care.
“Without being able to speak a word, Roki has led myself and my family down the path of discovering who we really are,” she says.
“Every day he faces the challenges of living within a body that has symptoms of a disabled body, there is pain, there is discomfort, but his eyes shine with the light of his soul, so bright we can hardly begin to understand the vastness of it.”
The experience of caring for Roki has profoundly transformed his mother’s life. Ina describes a journey of pain, heartbreak, but ultimately, profound transformation.
“It was a very difficult and dark time for me,” she admits. “First, there was the pain and heartbreak of ‘losing’ his life the way it could have been, not having him be able to play with his sisters or throw his arms around us and run with the wind in his hair.”
“Then, suddenly I had the urge to do whatever it takes, if it breaks me, if it is the last thing I do on the Earth.”
Through her unwavering determination, she embarked on a quest to find treatments for Roki, including cutting-edge stem cell therapy in India and America.
This journey not only provided Roki with medical care but led to significant personal growth for Ina.
“It was a period of action, crusading for a cause, spearheading a change in the way children like Roki are treated in this country,” Ina says. Through this experience, she developed a deep understanding of medical science and became an advocate for children with disabilities.
The stem cell treatment proved to be successful, but it wasn’t all sunshine and rainbows.
After Roki’s final stem cell treatment, he experienced a rapid growth phase accompanied by severe dystonia (a movement disorder that causes the muscles to contract which can be painful), a common condition in children with brain injuries. Roki’s episode of dystonia was particularly intense, lasting nearly two years. Ina and David, were forced to provide constant support, holding him day and night to comfort him and alleviate the painful spasms.
“This was the time where I really hit rock bottom,” recalls Ina.
“It was the end of the person I was before I had Roki, and from this place of surrender the new me was born, it was a distinct moment,” she shares. “I remember saying if there is a higher being, I surrender now, take us both as I have nothing left.”
“In that moment I could feel how my heart literally opened and a huge energy came within my heart space. From that moment I knew that Roki and I planned this life this way, it was a life purpose, a challenge with many lessons and gifts along the way.”
“I looked at it differently from then on, before I would look at the mums with their perfect babies walking past my windows and get so angry and sad for the life Roki had lost, for what we could have been as a family,” says Ina.
“But then I started to think about how Roki is changing me, teaching me, he is my disabled teacher in life. And so, my journey inward began, slowly I began to turn towards my own inner knowing and learning about alternative healing modalities that has shaped who I am today.”
Inspired by Roki’s impact, Ina has now founded the School of Roki. This initiative aims to share the lessons she has learned through her journey with others.
“I often joke about the fact that I have learnt more from Roki than what I did when I did my degree,” she says. “I know and feel that there can be much value in all his teachings for others, too”.
The School of Roki envisions a community where individuals can learn, grow, and connect. It will provide resources and support for families facing similar challenges and promote a deeper understanding of disability and resilience.
“My long-term goals really are to help children like Roki, just because they cannot speak does not mean they have to be ignored, it is time for them to be heard, not be shut out from society,” says Ina.
When asked about an update on how Roki is going now, Ina lights up. “Roki has just had his 11th birthday. He has not needed to go to hospital for years now, we are very proud to say that he is healthier than he has ever been.”
“Roki is enjoying doing distance education and often goes on excursions with some of his other ‘class mates’, he has many pen pals and loves to write to them all. He enjoys our family camping trips twice a year. Most of all Roki loves to be amongst us, in the action. He is learning how to play games on his eye gaze device that can read his eye movements, we hope that very soon Roki will be able to type using his eyes and then, finally, he can tell us all what he is thinking.”
“His story is coming, and it is big, look out world!
Upcoming School of Roki Retreat
“The time has come for me to share these gifts that I have learned, and so I invite you to join me for a 7-day retreat at the house I grew up in in South Africa, set in a private, secure game reserve where the animals walk free. Take a journey with me into the very core of your being and back out into the world again, set in a little slice of African Paradise.
Enjoy the sunrise and a morning walk amongst the animals, gentle yoga or stretching, breakfast, Kirtan mantra singing or meditation, lunch, a group activity, helping prepare dinner, sound healing, and singing around the fire…”
For more information: School of Roki Retreat
