Mum calls for cord blood trials in Australia to help kids like Roki Mills
Roki Mills has travelled to India three times for stem cell therapy to help treat his brain damage. Now mum Ina is fighting to get cord blood trials here in Australia.
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The mother of brain-injured Newport toddler Roki Mills is calling for government-backed cord blood trials in Australia.
Ina Mills, 41, said it was unfair sick children could not receive stem cell treatments here, which she said could benefit them.
She and her husband Dave chose “experimental” treatment in India because there were no other options in Australia.
Mrs Mills believes the treatment in India had helped encourage Roki’s body to repair itself.
She has started an online petition calling for financial support for trials and will meet NSW Premier Mike Baird next week, where she hopes to win his support.
Three-year-old Roki, who has severe quadriplegic cerebral palsy caused by a lack of oxygen at birth, has travelled to India three times for stem cell treatment.
Along with the stem cell therapy, Roki’s following a special US-based physiotherapy program and can now lift his head, move his arms and legs, swallow, cough and clear his lungs more independently.
Amazingly he has also learned to read.
Mrs Mills hopes Roki’s story will help persuade the government to invest in stem cell therapy.
“Why should I have to bundle my sick little boy, his four-year-old sister as well as his eight-month-old baby sister myself and my husband on to a very long flight to a developing country to find some therapy that works,” she said.
“It is no holiday. We sleep on the floor. We risk the health of our children. We expose our son to experimental treatment. We continue to do so because it is making him better.”
She said trials in Australia may never benefit Roki, but that didn’t matter.
“We believe Roki is here to help others.
“Maybe Roki’s story can be used to change laws.”
Australia’s first privately funded clinical trial of stem cell infusion from cord blood as a possible treatment for cerebral palsy is currently underway in Melbourne.
The safety trial, led by the Murdoch Children’s Research Institute (MCRI), will look at whether cord blood infusion is both safe and beneficial for children with Roki’s condition.
Professor Iona Nova from the Cerebral Palsy Alliance Research Institute said “the importance of the study cannot be underestimated”.
“Unfortunately we hear of many Australian children with cerebral palsy and their families travelling overseas to receive unregulated stem cell treatments at great cost. This study ... is an important first step towards potentially improving treatment options available for children with cerebral palsy.”
Mrs Mills said this trial was great news, but without government funding it could take a very long time before children were able to receive stem cell treatment in Australia.
Meanwhile, the family are planning another trip to India in October and then a trip to a specialist program in the US. The trip will cost $60,000.
To sign the petition click here change.org.
If you would like to help fund Roki’s treatment you can donate at rokiroad.com, where you can also buy tickets for fundraising events.
An Xmas in July comedy night is being held on July 23, from 7pm to 1pm, at Ted Blackwood Narrabeen Youth and Community Centre in Warriewood.
The Roki Road Beach Challenge is a 4km sand run at Long Reef on August 13. Entry is free, but entrants need to raise $100 in sponsorship.
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