Our beautiful daughter, Jacinta, is 32 years old. From a few months of age, we realised her milestones were a little slow, but she suffered from ‘glue ears’ so we thought this was the reason for the delay in sitting, crawling, walking, etc. At eleven months of age, she had a grommets operation and had to be resuscitated. This should have been the first warning of mitochondrial disorder (mito), but, of course, we had never heard of it.
We assumed that the brain damage she sustained was caused by this anaesthetic accident and immediately started early intervention in OT, physio and speech therapy.
At the tender age of three, she started school at Glenleighden, a special school for children with Language and Learning Disorders in Brisbane. It broke our hearts to see her dressed in her brown checked school uniform, brown school shoes and socks when she was still a baby.
When she was eight years old, we decided that Jacinta would benefit from being in a mainstream environment and moved her to a local school that had a Special Education Unit. She was happy there and did very well. High School was a different matter with Year 8 being one of the most distressing years ever…with 12 admissions to hospital for stress related illnesses. She suffered cyclical vomiting for 13 years (once again, we didn’t know this was related to mitochondrial disorder).
After completing high school, Jacinta completed numerous hospitality courses and was fairly independent. She also successfully completed Grade Six in Music (piano). She eventually got a retail assistant’s position with Coles Supermarkets and absolutely loved it. Unfortunately, the store closed in 2002 and everyone lost their jobs. The stress of this caused Jacinta’s first mental illness episode. We didn’t know what had struck us. Our beautiful daughter didn’t know us and decided she was married and had a different name. She was hospitalised and a whole, scary world opened up for us all. She had four more episodes of mental illness over the next four years, each one taking longer to overcome and never quite getting back to where she was before the episode.
When she failed to get better after the last episode, we insisted on finding out why and were referred to a psychiatrist who had an understanding of mitochondrial disorder. He ordered numerous blood and urine tests and when these came back with markers for mito, he referred her to Professor Frank Bowling at the Mater Hospital. Dr Bowling repeated the tests, receiving the same result. In December, 2007, he called us into his office and said that we needed to go home and get carers organised because there was nothing to be done to help our precious girl. She would become more and more disabled. There was no treatment.
Jacinta loved the beach, so we decided to sell up our newly renovated home in Brisbane and move to the Gold Coast so that we could give her the best quality of life possible. This worked beautifully…for a very short while.
We also got her a little dog, Muffin, who has become her best friend.
Mitochondrial disease is rapid. In just four years, Jacinta has gone from being fairly independent, having a job and being able to care for herself to now being reliant on us for every facet of her existence. She has developed advanced dementia, confusion, mental illness and incontinence in just a few years. We can no longer get her out of the house – she is too tired to go for a walk or swim and cries constantly. She doesn’t know what day it is, where she is or what’s happening. She hallucinates about her hair falling out and thinks her body has disappeared. She also believes she is dead and is terrified most of the time, despite being reassured every five minutes.
Unfortunately, due to the lack of awareness of mitochondrial disorder, there are limited services at the Gold Coast that are geared to help us deal with her complex needs, so we are battling on at home, taking one day at a time with just a few hours of respite each week. Carers don’t last long due to the stress of caring for her. Our daughter’s needs are too complex for placement in an established respite or residential facility – Disability Services in Queensland are geared toward people with only one disability and Jacinta ticks too many boxes!
As my husband and I are both 64 years old, we are extremely concerned about what will happen to our daughter when we are no longer able to care for her. We are doing our best to make politicians aware of mitochondrial disorder and the urgent need for research, treatment and facilities to help sufferers and their families.
- Dawn Richards
April 2011