Emilia's Fundraiser

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Why I’m doing Jeans for Genes

You all know we are huge advocates for research and this year we’re so proud that Emilia has been chosen as a face of the 2022 Jeans for Genes campaign.

We know that vital work is being done to find treatments and maybe even a cure for cystic fibrosis, so please support our fundraising.

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29 Jun 2022 by Jackie Lonsdale

Emilia's Story

As first-time parents, Jacqueline and Chris had simple dreams for their future – a house filled with happy and healthy kids. Then everything they thought parenthood would be changed.

When Emilia was born, her parents felt something wasn’t right from the beginning. She constantly fed, but milk went right through, so she struggled to gain weight. She cried and struggled to sleep, but as first-time parents, Jacqueline and Chris were told to be patient.

“I remember we were sitting on the couch, and it was three in the morning, and we put her to bed about four or five times, and we thought, something's not right,’’ Chris said. “We had five weeks of that. No sleep. We were just getting through.’’

One morning, a nurse called to say that Emilia’s newborn screening results had come through and she had tested positive for cystic fibrosis. Both parents were carriers and yet neither of them knew. Both their older siblings had healthy children.

“It was such a shock,’’ Jacqueline said. “When your child gets diagnosed, you also get a weird diagnosis at the same time. Everything you thought parenthood would be changes. I remember our nurse saying to us, ‘just do us a favour, don't Google it, the life expectancy is so low’.’’

Chris said they immediately had to adapt to waking to medicine and physiotherapy, then more medicine before every meal, getting use to a nebulizer, and adjusting to a child who wasn’t allowed to do all the everyday things that most kids take for granted.

“Everything changed, I guess the plans that you have for your family and kids. You think we’ll have a family and she'll grow up healthy, she'll have all the opportunities that life can offer. And I think it really hits home when you start getting information that, no, this is her every day. I think the first 10 months of this diagnosis was just us at home with Emilia, a child with a chronic lung condition in a pandemic, that affects the lungs. Needless to say, we were a little stressed.’’

One of the hardest aspects for parents of a child with a genetic disease is the guilt of unknowingly passing that gene onto their child.

“That guilt is hard some days,’’ Chris said. “You know when you're sitting there and she's screaming because she doesn’t want to do a nebulizer, or she doesn’t want to sit still and do physio, or she just wants to go outside, and you just need a moment to go, this is our reality. And it's hard because often people don't see that side of a genetic condition. No matter what happens every single day, this is what they have to do. It's not a matter of choice. There's no choice in this.’’

The family have met Associate Professor Leszek Lisowski from CMRI who is doing work into the possibility of using gene therapy for cystic fibrosis. It is hoped that, one day, a single injection could correct the gene mutation.

“Jeans for Genes for us is hope,’’ Chris said. “The reason it’s hope is because we're at a stage where research is making leaps and bounds, particularly in the genetic field. We've gone to the clinic, we've seen the researchers, you can see how far it's come even in the last 10 years. We want to work with Jeans for Genes so that genetic conditions can be a thing of the past."

20 Jun 2022 by Jackie Lonsdale

Meet Emilia

Latest donations

$ 115

Lj Hooker Mandurah donated at 3 weeks ago

$ 224.56

Upper Lachlan Shire Council donated at 3 months ago

"A small way to show our support to a good cause. The staff of ULSC."

$ 2.64

Anonymous donated at 3 months ago

$ 55.92

Veronica Macdonald donated at 3 months ago

"All the best wishes for Emilia. This is on behalf of Peter Jones."

$ 55.92

Jean Wilmott donated at 3 months ago

$ 31.65

Aggie Kent donated at 4 months ago

$ 53

Jo House donated at 4 months ago

"❤️"

$ 70

Matched Giver donated at 4 months ago

"Your donation has been doubled"

$ 70

Lps 2022 donated at 4 months ago

$ 63.30

Matched Giver donated at 4 months ago

"Your donation has been doubled"

$ 63.30

Anonymous donated at 4 months ago

"Well done little Emilia"

$ 10.55

Matched Giver donated at 4 months ago

"Your donation has been doubled"

$ 10.55

Anonymous donated at 4 months ago

$ 10.55

Matched Giver donated at 4 months ago

"Your donation has been doubled"

$ 10.55

Anonymous donated at 4 months ago

$ 55.92

Matched Giver donated at 4 months ago

"Your donation has been doubled"

$ 55.92

Breanna Hudson donated at 4 months ago

$ 55.92

Matched Giver donated at 4 months ago

"Your donation has been doubled"

$ 55.92

Robyn & Ian donated at 4 months ago

"Your a beautiful and amazing family. Very best wishes from Rob, Ian, Sal & Harriet x"

$ 21.10

Matched Giver donated at 4 months ago

"Your donation has been doubled"

$ 21.10

Teresa D'agostino donated at 4 months ago

$ 10.55

Matched Giver donated at 4 months ago

"Your donation has been doubled"

$ 10.55

Anonymous donated at 4 months ago

$ 5.28

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"Your donation has been doubled"

$ 5.28

Aimee Meznaric donated at 4 months ago

$ 5.28

Matched Giver donated at 4 months ago

"Your donation has been doubled"

$ 5.28

Anonymous donated at 4 months ago

$ 5.28

Matched Giver donated at 4 months ago

"Your donation has been doubled"

$ 5.28

Anonymous donated at 4 months ago

$ 380.50

Matched Giver donated at 4 months ago

"Your donation has been doubled"

$ 380.50

Lps 2022 donated at 4 months ago

$ 10.55

Matched Giver donated at 4 months ago

"Your donation has been doubled"

$ 10.55

Anonymous donated at 4 months ago

$ 10.55

Matched Giver donated at 4 months ago

"Your donation has been doubled"

$ 10.55

Aaron Rose donated at 4 months ago

$ 5.28

Matched Giver donated at 4 months ago

"Your donation has been doubled"

$ 5.28

Anonymous donated at 4 months ago

$ 55.92

Matched Giver donated at 4 months ago

"Your donation has been doubled"

$ 55.92

Anonymous donated at 4 months ago

$ 55.92

Matched Giver donated at 4 months ago

"Your donation has been doubled"

$ 55.92

Anonymous donated at 4 months ago

$ 109.72

Matched Giver donated at 4 months ago

"Your donation has been doubled"

$ 109.72

Renee Bercich donated at 4 months ago

"A worthy cause"

$ 21.10

Matched Giver donated at 4 months ago

"Your donation has been doubled"

$ 21.10

Daria Beatrice Westerman donated at 4 months ago

$ 109.72

Matched Giver donated at 4 months ago

"Your donation has been doubled"

$ 109.72

Anonymous donated at 4 months ago

$ 55.92

Matched Giver donated at 4 months ago

"Your donation has been doubled"

$ 55.92

Parry Family donated at 4 months ago

$ 109.72

Matched Giver donated at 4 months ago

"Your donation has been doubled"

$ 109.72

Olivia Barilla donated at 4 months ago

$ 42.20

Matched Giver donated at 4 months ago

"Your donation has been doubled"

$ 42.20

Peter Jones donated at 4 months ago

$ 10.55

Matched Giver donated at 4 months ago

"Your donation has been doubled"

$ 10.55

Lajja Champaneria donated at 4 months ago

$ 55.92

Matched Giver donated at 4 months ago

"Your donation has been doubled"

$ 55.92

Jeniene Grice donated at 4 months ago

$ 10.55

Matched Giver donated at 4 months ago

"Your donation has been doubled"

$ 10.55

Raina Li donated at 4 months ago

$ 10.55

Matched Giver donated at 4 months ago

"Your donation has been doubled"

$ 10.55

Jainesh Ram donated at 4 months ago

$ 10.55

Matched Giver donated at 4 months ago

"Your donation has been doubled"

$ 10.55

Krishant Ram donated at 4 months ago

$ 105.50

Jeans For Genes donated at 4 months ago

"Your donation has been doubled"

$ 105.50

Greg & Pamela Long donated at 4 months ago

"Sending you all our love, our little Princess. Love, Anma & Ada"

$ 8.11k

Jeans For Genes Donor donated at 4 months ago

$ 8.11k

Anonymous donated at 4 months ago

""Denim Day out Event""

$ 1.27k

Patrick Lonsdale donated at 4 months ago

"Love grandma uncle pat and uncle Zaydis xxx"

$ 211

Mum And Dad donated at 4 months ago

"From Mummy and Daddy we are so proud of you Emilia"

$ 4.68k

Anonymous donated at 4 months ago

"Denim Day out Event"

$ 500

Poppy donated at 4 months ago

"To my beautiful Granddaughter Poppy loves you so much"

$ 55.92

Russell Piercy donated at 4 months ago

$ 109.72

Alison Louise Russell donated at 4 months ago

"You are amazing Emilia xx"

$ 158.25

John Bercich donated at 4 months ago

$ 50

Anonymous donated at 4 months ago

$ 211

Frank Maurizi donated at 4 months ago

"Dear Jackie and Chris, We are very sorry we can't make it today. We look forward to attending the next one. Kind regards, Alexis and Frank"

$ 60

Jessica Gowans donated at 4 months ago

$ 60

Anonymous donated at 4 months ago

$ 90.73

Briana Filmer donated at 4 months ago

"So much love little one!"

$ 21.10

Christine Lucic donated at 4 months ago

"Raffle tickets . Good luck with the findraising"

$ 105.50

Vicki Kashian donated at 4 months ago

"Good luck with the fundraising event! Love Vicki & Kegan xx ❤️"

$ 90.73

Christine Lucic donated at 4 months ago

$ 31.65

Nicole Young donated at 4 months ago

"💛"

$ 316.50

Anonymous donated at 4 months ago

$ 42.20

Danielle Crosbie donated at 4 months ago

$ 42.20

Carlie Soh donated at 4 months ago

"Good luck with your fundraiser Emilia 😀"

$ 90.73

Monica Bortolotti donated at 4 months ago

"Well done Emilia!"

$ 150

Surekha Singh donated at 5 months ago

"Go Team Emilia!!"

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