LITTLE Daisy's nine weeks of life have been a battle every step of the way.

The Sunshine Coast bub has been diagnosed with a genetic disease so rare that only three people are known to have it - Daisy, her mum, and her brother David.

Daisy's mum Donna Spittles said her daughter would need life-saving open heart surgery in the coming weeks thanks to a rare manifestation of a ventricular septal defect, or a hole in the heart; a fairly common heart condition.

"Basically, it's a gap between the chambers of the heart and it means when the heart is pumping it has to pump extra hard," Mrs Spittles said.

9 week old Daisy Spittles has a rare heart/tissue condition and will require heart sugery in a few weeks.
9 week old Daisy Spittles has a rare heart/tissue condition and will require heart sugery in a few weeks. john mccutcheon

"Some of the blood that should go through is coming back.

"(My son and I) had a ventricular septal defect repair.

"VSD is fairly common, but the thing that's caused the heart defect in us is a connective tissue disorder.

"There are certain genes that if you have them and they're defective can cause a connective tissue disorder but in myself, my son, and Daisy they've done genetic testing and they can't find the gene that's responsible.

"They believe that we have started our own defect."

Daisy's heart problem has caused breathing difficulties and fatigue to the point that she can't eat on her own.

9 week old Daisy Spittles has a rare heart/tissue condition and will require heart sugery in a few weeks. her mother Donna Spittles and brother david also have the condition.
9 week old Daisy Spittles has a rare heart/tissue condition and will require heart sugery in a few weeks. her mother Donna Spittles and brother david also have the condition. John McCutcheon

"She's set up with her feeding tube which drips in a few millimetres at a time so her heart doesn't get overwhelmed," Mrs Spittles said.

"It also means she can't be moved... her heart is working so hard it's causing a lot of vomiting."

Doctors are hoping Daisy will put on weight before her surgery, currently scheduled for August, a feat proving almost impossible.

The Woombye mum said there had been a 50/50 chance that Daisy would be born with the disorder.

After seeing her own dreams of working in the police force crumble because of her disease, Donna had hoped for a better life for her children.

"I think for my husband and I (Daisy's diagnosis) has almost been like having PTSD," she said.

"We were really hoping we'd dodged a bullet with Daisy," she said.

"We really thought she was going to be okay but it turns out her VSD is worse than David's was."

Daisy Spittles.
Daisy Spittles. John McCutcheon

 

David, aged five, had open heart surgery at three months of age.

Now in his first year of primary school, Mrs Spittles said his condition made muscle-based tasks like holding a pencil incredibly difficult.

David is also plagued by fatigue, making withstanding a full day at school a difficult task.

Aidan and Donna have decided to have no more children after Daisy's diagnosis, deeming the risk to mum and any future babies as too great.

"Even though it's a 50/50 chance... there's no way we'd risk having another," she said.

Although Daisy's surgery is covered by Medicare, the family will struggle to afford accommodation during Daisy's time at Lady Cilento Children's Hospital in Brisbane, as well as the medications she will need post-surgery.

"We really struggled financially last time," Mrs Spittles said.

Daisy with mum Donna Spittles.
Daisy with mum Donna Spittles. John McCutcheon

"Knowing what's coming meant we needed to ask for help."

The Spittles have set up a GoFundMe account in the hope that the community will rally around them in their time of need.

Any funds raised beyond accommodation and Daisy's immediate needs will be donated to Ronald McDonald House.

People are already donating to their cause, but as the family isn't sure what the surgery and associated costs will total, people can donate beyond the set target.

"I just really would like to say we really appreciate it," Mrs Spittles said.

"Complete strangers have reached out to support Daisy and what she's going through.

"That on its own has been a huge benefit to us as far as our own mental health goes and feeling like we're not on our own with this."

Visit https://www.gofundme.com/42m8yao to donate.



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