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Daniel and Jessica both have cystic fibrosis, which means a life expectancy of 37 years.

Just days after Daniel was born, his mum, Joanne, was concerned with his feeding. Six weeks later, a heel prick test revealed that he had cystic fibrosis, a fatal genetic disease affecting breathing and even the ability to digest food.

Joanne was devastated: "When you’re told that your child has an illness, you go through a grieving process, you ask yourself, 'When’s the day that my child will no longer be here?'"

Six years after Daniel was born, Joanne had a daughter, Jessica, only to find out that she too had cystic fibrosis.

"The reality is, I will probably outlive both my children," she said.

The despair of having a second child diagnosed with cystic fibrosis was made even more difficult by Jessica’s physical health.

"Jessica was born with dislocated hips, which made her physio to begin with particularly difficult."

Daniel and Jessica with mum JoanneBut thankfully for Jessica, she has a very special older brother to help her through.

"Daniel looks after Jessica, he’s very protective of her. He helps her with her treatment and now has someone to share it all with. Their relationship is incredibly special."

Now, having had a second child with cystic fibrosis, Joanne is especially proud of Daniel’s personal contribution to the research. "Daniel was part of a five year study. I’m glad he did. I think it really helps down the track, helps them know a lot more about cystic fibrosis."

Research is all that gives Joanne the strength to keep going; it’s the only hope she has left: "The medical research is improving every day. When Daniel was diagnosed, they said he may not live to 12 or 13; he has now hit 10 years old."

Help increase the life expectancy of sick kids like Daniel and Jessica by donating today. We need to raise $440,000 for this appeal by the 30 June to fund vital research towards respiratory illnesses such as cystic fibrosis).

All donations over $2 received by 30 June can be claimed as part of your 2010 tax return.

5 Comments

  1. pam on Tuesday 21 June, 2011

    Hi, you and your children are an inspiration to us all. My 2 daughters were both checked for c.f. over 28 years ago. Their results were negative but the wait to find out was very nerve racking. My girls have had and still have their share of health problems and we never know what tomorrow will bring. One thing with c.f. is research has come a long way in the past 30 years, so hang in there. regards pam

  2. lilian Jurey on Monday 20 June, 2011

    I have a 10 year old granddaughter with CF, under the care of RCH. Kids with CF are my heroes, they dont moan and groan, they just get on with living. My prayers are always with you. Nat's Gran.

  3. Kym McKnight on Tuesday 7 June, 2011

    Hi I had a daughter Kasey who had cystic fibrosis sadly she loss her fight at the age off 71/2 15yrs ago even tho she is not with us CF is as I am a carier even tho my 3 girls Summah-Rose 10, Jemma 8 and Gorja 3 don't have CF there is still a chance they my have kids with it as they my be cariers too so we always support CF and The Royal Childrens Hospital as my yougest Gorja had to go too the Hospital for 8mths as she had to wear a halmut to reshape her head it was like going back home when we 1st walked in as we were there so much Kasey!!!

  4. Ashley on Thursday 2 June, 2011

    hello its so sad sorry to hear this about your children

  5. stella seelenmeyer on Thursday 2 June, 2011

    my grandaughter has this to brittanie seelenmeyer its hard to deal with but a lot more people could be involed if they took the time to learn about this more , there is only 1 day in the year where it has crazy hair day cancer kids get a lot more funding where as C F kids dont get much funding to help them much please advertise this C F more for help for the little kids we are looseing at young ages, and they should have the write to get funding same as cancer kids , LOT more needs to be publised about this , to help people understand thanks stella

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