What it's like to be a 9-year-old carer

By news.com.au, Emma Reynolds

Jamie has been helping her mum, Helen since her father died when she was just 2 years old. Photo: Supplied
Jamie has been helping her mum, Helen since her father died when she was just 2 years old. Photo: Supplied

Jamie-Marie Genito has a very different life to that of most 9-year-olds.

As the sole carer for her mother Helen, who has an aggressive form of multiple sclerosis, she cooks, cleans and tidies up around their Melbourne home.

Jamie has been helping her 48-year-old mum since her father died when she was just 2 years old. While Helen receives a disability pension, the pair don't receive any carer's allowance because Jamie is considered a minor.

"Occasionally I'm really jealous of my friends because I don't have the things they do, but I know mum can't afford them," Jamie told news.com.au. "They don't really have to do chores. They have all the things I don't. They have both parents and neither of them have MS."

But she says she and her mother are best friends. "I can tell her everything. She's like a human diary.

"Our relationship is really close."

Helen was diagnosed at 38 years old, just after Jamie was born. She had spent seven years trying to have a child and succeeded on her third round of IVF.

"About four to five weeks after she was born, I wasn't feeling myself," said Helen, from Melbourne. "I was walking like I was drunk and just in a fog.

"My mouth went off to the side and I was drooling and my vision was starting to get very blurry.

"My husband thought I had had a stroke."

In the hospital, she found herself falling out of bed, unable to swallow and incontinent. Six weeks after giving birth, Helen received devastating news that her brain was full of lesions and she had MS.

Jamie stayed in the maternity hospital because she hadn't had vaccinations. When they were reunited, Helen was no longer able to nurse her child.

Two years later, she lost her husband to diabetes while he was in the US. Helen had returned to Melbourne early to get more medicine. "I remember flying over to the US to organise his funeral," she told news.com.au. "I thought, I'm going to let myself cry at the funeral.

"I went into business mode. I was taking care of the bills, the funeral, Jamie, everything was on me. I wouldn't have my partner to fall back on."

The shock of her husband's death resulted in a major MS relapse for Helen, which has left her with a permanent, progressive weakening of the left side, and an ongoing tremor.

These days, Jamie makes the beds, hangs and folds the washing, dishes up pancakes and salads and makes cups of tea. Helen tries to ensure Jamie gets to spend time with other children, although she often can't personally take her daughter to things because she is exhausted just from getting up.

"She's my reason to get out of bed," Helen says of Jamie. "We're very close. She sees my daily struggle. I'm determined to make sure she gets a childhood. I don't want her to grow up thinking, 'all I ever did was look after mum.'

"She's my world, she's my whole life. She's going to finish school and do amazing things."

As for Jamie, she hopes to become a teacher was she's older, but most of all, she hopes they come up with a cure for MS.

"MS is like the villain in a fairytale for me," she said. "It would be amazing if there was a spell that could take away MS just like that.

"MS makes my mum tired a lot and it's sometimes very hard. I love my mum to infinity and beyond."

Jamie is taking part in a MS Walk and Fun Run on June 5, to raise money for the MS Society, which provides support and respite relief for families like Helen and Jamie.

- news.com.au

- news.com.au

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