It's understandable when Rodriguez-Pena becomes emotional as she talks about her daughter's love of the Disney film Frozen or how happy and excited Rian gets when her older brother plays with her and runs around the room. Moments like these are a reminder to Rodriguez-Pena the incredible little girl that is her daughter is "in there" and "we need to get her out."

AADC is an extremely rare disease with about 130 cases worldwide. Dr. Jim Dowling, a senior scientist and staff clinician at the Hospital for Sick Children in Toronto, diagnosed Rian and says he's only aware of two others, and possibly a third, in Canada with AADC.

The average life expectancy of a child diagnosed with the disease is between five and seven years according to Rodriguez-Pena who says about three children with AADC die each year.

Meanwhile, she knew shortly after Rian, her second child, was born that something was wrong. She was sleeping almost around the clock and wasn't feeding very well.

When the little girl wasn't hitting her milestones, they took her to see a pediatrician. When she reached four months and wasn't able to reach for toys and couldn't lift her head, it began her long and arduous journey of testing.

Between the ages of four and 11 months, Rian had a battery of tests. There were blood samples taken, spinal taps, countless MRIs and EKGs. The list goes on and on as she was tested for at least 100 disorders.

"It's nothing short of emotional torture," said Rodriguez-Pena of the tremendous fear and uncertainty that comes with having an ill child but being unable to learn why they were suffering. "Every inch of your life is consumed with fear and worry. I'll never forget that trip (of) driving to the hospital when they called to say they had a diagnosis."

But, Rodriguez-Pena remains hopeful and looks to progress being made when it comes to gene therapy to treat AADC. It involves taking a working copy of the AADC gene and surgically implanting it in the brain to act as a replacement and allow the patient to produce dopamine and serotonin.

She played a Reuters video about another little girl who was helped by the treatment and there's hope in her voice when she mentions a Taiwanese family she's been in contact with. Their little boy also suffers from AADC and, after the gene therapy and a couple years of physical therapy, he went from being bedridden to able to stand on his own.

"I think about it like a thousands times a day," said Rodriguez-Pena, adding she desperately hopes it will be approved for use in North America in time to help her daughter. Dowling said the treatment is undergoing clinical trials in the United States.

On April 7, the family is hosting a fundraiser at the Oasis Convention Centre. There will be an illusionist plus a DJ and dancing. Half of the funds raised will go to cover Rian's medical needs while the remainder will be donated to the AADC Research Trust in Britain.

Email AADCfundraiser@gmail.com for more information.