by Kate Dwyer
TYLA-Rose Brown is about to make history as the first child in Australia to receive a revolutionary new chemotherapy.
The new treatment is the only option left for the nine-year-old Bonny Hills girl who has battled cancer for the past thee years.
Mother Sharlene said it’s Tyla-Rose’s dream to simply live.
To achieve this, the family is calling for help. The treatment is only available in the United States and costs $11,400 US dollars a month. Doctors estimate the treatment will take between six and nine months if it works. Sharlene said they should know after three months what the outcome will be.
Last week the Tyla-Rose was offered a place for the treatment in Portland, Oregon, and planned to fly today to the US to begin her treatment. If she doesn’t get to the US by the end of the week her appointment will be offered to someone else.
The little battler needs funding fast to ensure she can receive the full therapy. Donations are sought from individuals, businesses and any generous soul who can spare a few dollars.
“The community has been incredible so far in their support for Tyla-Rose. We can’t thank them enough,” Sharlene said.
In 2006 a massive family fun day was held at Rainbow Beach Bonny Hills and several separate charity event including an annual golf tournament regularly raise funds to help with Tyla-Rose’s treatment.
In 2006 it was Tyla-Rose’s dream for her family to visit Disneyland. Thanks to fundraising by the local community, organised through the Brown family’s close friend Toots Hasler, that wish was granted ... and then some. The family also used the funding to help purchase a new vehicle for Ronald McDonald House in Sydney to ease transport for other families of children receiving treatment for terminal diseases.
“In 2006 we thought Tyla-Rose was in a period of remission and her dream was to go to Disneyland,” Sharlene said.
“In August 2006 doctors found a massive tumour in the base of her spine and now it’s her dream just to live. We hope people can support her dream again.”
Sharlene said the family’s determination to continue treatment stems from Tyla-Rose herself.
In recent months she’s lost two of her best friends to cancer but she’s determined to keep fighting.
“We said it’s ok if she wants to stop,” Sharlene said.
“But she’s so determined. She said ‘Don’t even talk about that to me.’ Adults would not survive this and most children receive treatment for a year and then pass away. She’s been fighting and receiving treatment for three years.
“She wants to live and have children. And we don’t want to give up either.
“She’s nine and incredible. She’s not in a kids’ world anymore. She’s so mature and focussed on what she wants. She’s determined not to accept anything less and I think that’s what has got her here.
“We can’t give up because this treatment could be the one. We don’t want to regret not going and trying. She wants to go and you have to back your kids 100 per cent.
“We are desperate and she won’t accept defeat especially when a possible cure is just a flight away.”
The treatment is a new form of gene chemotherapy which targets cells the cancer feeds on to grow without killing the good cells. In traditional therapy the treatment kills the good and cancerous cells which is why patients become ill.
“We hope it works. But even if it doesn’t work this will open the doors for others,” Sharlene said.
“The next person could be your neighbour’s child and it might work for them. The best outcome if it works is it will be a cure. She’ll grow up. That’s her dream. She wants to have children and watch her brothers and sister grow up.”
Following a positive outcome, Tyla-Rose will require further operations to repair the damage done to her body during years of rigorous treatment.
Sharlene said she hoped to raise enough money for the whole family (dad Scott, brothers Jaiven, Kingsley and sister Faith) to be in the United States for Tyla-Rose. Throughout their ordeal the family has steadfastly remained together.
“We lost our house because we decided to be together while Tyla-Rose was in Sydney,” Sharlene said.
“We’ve always been together throughout this because it’s better to have time, you can’t get that back.”
To help Tyla-Rose donations can be made at any Commonwealth Bank to the Everingham Tyla-Rose Brown Trust, BSB 062648 account number 10105014.
Tyla-Rose’s brave battle
Shortly after her sixth birthday Tyla-Rose was diagnosed with an aggressive malignant muscle tumor – Rhabdomyosarcoma – underneath her brain. She received immediate treatment at the Children’s Hospital at Westmead. Her first protocol of treatment, chemotherapy and radiotherapy, lasted 50 weeks.
After a period of nine months in remission the cancer returned in her spine, lungs, legs and pelvis.
Another 40 weeks of chemotherapy and radiation followed as well as a bone marrow transplant.
Immediate tests after the transplant revealed the tumour had resurfaced at the base of the spine and lungs. Tyla-Rose then underwent an experimental form of chemotherapy which was being trialled in France. The treatment failed and now her hopes lie in the USA as part of a revolutionary gene therapy trial called IGF-IR.
At the moment Tyla-Rose’s cancer is at a stable plateau and she is in a good position to recover should she have access to this new treatment. But without this treatment her time is limited. The US trial has shown remarkable results and significant success in children like Tyla-Rose, who have exhausted all other treatment options.
“Participating in this trial holds very real hope that Tyla-Rose can achieve remission and even be cured,” Sharlene said.