Ausnew Home Care | Meet Jezzie, the 13-year-old girl fighting

Meet Jezzie, the 13-year-old girl fighting autoimmune disease who donated her Starlight Wish to a child she has never met

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It was a family trip to the Philippines at the age of 6 that prompted Jezabella "Jezzie" Ortega Austen to use her Starlight Wish and make a big change in the life of someone less privileged than her.

"I remember saying to Mum, 'what's the point of spending five minutes with your favourite celebrity when you can change someone's life for the rest of their life?'" Jezzie said.

At the age of 18 months Jezzie was diagnosed with Acute Disseminated Encephalomyelitis, a rare kind of inflammation that affects the brain and spinal cord.

After 23 general anaesthetics, more than 30 rounds of botox and six surgeries in one, the now 13-year-old has made her own wish come true by using the funds to sponsor a girl's education in Uganda.

Jezzie rehab. Ausnew Home Care, NDIS registered provider, My Aged Care
Jezzie underwent six surgeries nearly two years ago to help strengthen and loosen her muscles.(Supplied: Jonnah Ortega)

"I remember coming home to a package and it was this little star teddy bear and it said, 'write your wish and put this piece of paper in with the teddy bear and leave it under your pillow and your wish will come true in the morning'."

"I felt extremely sick to the stomach because I was like I’ve got one chance at this and if I make this wish now, I'm not going to have a wish in the future, so I held off on it for a while.”

The Starlight Wish, through charity organisation Make-A-Wish Australia, grants a once-in-a-lifetime wish to children between the age of 2 and 18 who have a serious illness.

But from the very beginning, Jezzie has endeavoured to use her wish to help others, rather than to meet her favourite celebrity or be gifted the present of her dreams. 

"I remember Mum saying, 'save it so you can go listen to one of your favourite boy bands when you're older, like One Direction'," Jezzie said.

"I remember saying, 'Mum, I hate One Direction' and now I'm literally obsessed with One Direction, so it's pretty funny."

A heartfelt trip to the Philippines

Jezzie’s mother Jonnah Ortega was initially shocked when her daughter revealed how she wanted to use her Starlight Wish.

Jezzie's letter to Make A Wish
In a letter to Make-A-Wish, Jezzie wrote of how she wanted her wish to help improve the lives of children overseas.(Supplied: Jonnah Ortega)

"We wanted to explain to Jezzie that the whole idea of the Starlight Wish is to give sick children the opportunity to forget about all the doctor's appointments and surgeries and rehab, and just take five away from all that."

"Once she said why she wanted to do it were very much supportive of that wish."

Jezzie and her family in the Philippines
Jezzie realised how she wanted to use her Starlight Wish after a family trip to the Philippines.(Supplied: Jonnah Ortega)

Jezzie said her intentions for the Starlight Wish came to her when her older sister went missing on a family trip to the Philippines.

A chord was struck when she noticed children her age living on the streets without adequate food or water.

"We were trying to find my sister and we walked past at least 20 kids who were sitting down – and it's a very vivid memory," she said.

"They were on the ground ... they didn't have food, their ribs were showing, they didn't have clothes; they were just lying on cardboard boxes, and it was a very, very hot day."

Wish granted for children in Uganda

After receiving Jezzie's letter, Make-A-Wish put her and Jonnah in touch with School for Life, a Uganda-based charity focused on helping improve education in the country.

"I wanted the person to be my age and from that they came back and said, 'you can sponsor a girl called Aminah and a teacher called Geraldine'," she said.

Ugandan girl Aminah
Jezzie used her wish to help provide 12-year-old Aminah access to an education, food and water.(Supplied: Jonnah Ortega)

"What that does is it gives them three meals a day and it also pays for [Aminah's] schooling funds and her school supplies, her hygiene and it makes sure that she's safe and happy and healthy."

Determination and fighting spirit prevail

Jezzie's exercise physiologist, Cathy Rowe has run twice weekly sessions with Jezzie for the last two years, to help improve her muscle rehabilitation after surgery.

"We work on a few different things from her strength and coordination to helping improve her gait patterning and over strength and conditioning," she said.

Cathy Rowe and Jezzie
Jezzie has attended twice-weekly sessions with exercise physiologist, Cathy Rowe (left) since her surgery.(ABC Broken Hill: Jonathon Poulson)

Ms Rowe said she has been continually impressed with her determination and spirit.

Although Jezzie will always need some form of physiotherapy, Ms Ortega said the experience has made the family stronger. 

"We're thankful that we've had this experience because we've been able to look at things a lot differently. To be grateful for the little things, or every little win that someone in our family has to be celebrated," she said.

"Truly, we couldn't be prouder."


Source: ABC

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