South County family raising money to help improve life for daughter with rare disease
OAKVILLE, Mo. (KMOV) - A South County family is now leaning on their community in order to help care for their daughter Fiona. The 8-year-old was born with multiple different health struggles causing permanent disabilities. The family is now on a mission to secure a machine that could help improve Fiona’s quality of life for years to come.
“When I was 37 I had an ectopic pregnancy, and I lost three-fourths of my body’s blood. I completely flat-lined, lost my life, [the doctor] was actually able to save me, but I did lose the left ovary and left fallopian tube,” Tonja Ross said.
Ross, a Missouri native, was told she would never be able to get pregnant and have children. However, seven years later she did exactly that.
“I found out I was pregnant with Fiona,” Ross said.
It was a wave of excitement for Tonja, but that was quickly clouded when doctors and specialists told her some tough, unexpected news.
“The first doctor said ‘I’m a geneticist and your child is going to be born with down syndrome’. The second doctor said that he was a cardiologist and said your child was going to be born with a rare heart defect,” Ross said.
The list didn’t stop there. A third doctor came into the room.
“[They] said she had a very rare brain abnormality. Three percent make it to birth and one percent make it to six months,” Ross explained.
Against all odds, Fiona is now almost 9 years old.
“She has been nothing but a blessing,” Ross said.
Ross, her husband Anthony and specially-trained nurses care for Fiona every second of every day. It’s a job that grew increasingly challenging in 2019.
“That’s when they found out I had invasive ductal carcinoma HER2. I had breast cancer. I went through the lumpectomy, and then I went through six months of chemo,” Ross said.
However, that didn’t keep Ross down. During that six months, she said she got to work researching tools to help spur her daughter’s cognitive growth.
“I came across Trexo Robotics in Canada, and it is a robotic gate trainer I control with a tablet,” Ross said.
It’s a machine that not only helps Fiona walk but also stimulates brain activity and muscle memory. Ross said Fiona’s been non-verbal for her entire life, until a few months ago when she started using the Trexo regularly.
“She’s telling us ‘yes’ and ‘no’, you know smiling for yes and shaking her head for no. She’s telling us ‘done’, ‘go home’. It’s very impressive,” Ross explained.
The Trexo gate trainer, in total, costs $35,000, out of Ross’s budget. The Make-A-Wish foundation covered the first four months Fiona was using the machine, Ross said. Now, they’re working to raise the money to keep it permanently.
“We are on borrowed time. She will not graduate high school, she will not go to college, she will not drive, but the one thing I can guarantee is I will give all of me to her to live the best life she possibly can,” Ross said.
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