Posted in Patients
Posted by Kylie Flament
on 27 June 2017
Mum Danielle puts it beautifully:
"Why we started Team Harley: To raise awareness for Congenital Heart Disease in memory of our amazing little heart angel Harley and raise much needed funds to the one place that was our second home."
Watch a short video of Danielle and Harley's story.
Team Harley came together for the City2Surf 2016, raising $43,000 for the Heart Centre for Children. This year, they're aiming for $50,000, to purchase two ECG machines and some other items for our inpatient area, Edgar Stephen Ward.
For more about Team Harley's efforts, head to the Team Harley Facebook Event page or, to donate, go straight to their EveryDayHero page.
They're also hosting a Night for the Superheroes of the Edgar Stephen Ward.
Date: Saturday 5 August 2017
Time: From 6.30pm
Location: Riverstone Schofields Memorial Club
Tickets: $50
More information: See Facebook page (link above) or contact Danielle on 0424...
Posted by Kylie Flament
on 23 June 2017
One of our patients, Halor, was featured on The Children's Hospital at Westmead's Facebook page this week:
"Born weighing just less than a bag of flour, Halor was a very little baby entering a very big world. Even smaller though was his tiny heart, which due to a serious heart condition, was working overtime to pump blood to the rest of his body. Surgery was vital to fix Halor's heart and is ultimately the reason, 11 years on; he is able to run the City2Surf.
This August, Halor will be running as part of City2Surf - Team Bandaged Bear not only to give back to the doctors and nurses who helped him, but also to raise money for other children with heart conditions.
You can go the distance #forsickkids too by registering as part of Team Bandaged Bear or by making a donation. Visit www.bandagedbear.org.au/event/city2surf"...
Posted by Kylie Flament
on 12 May 2017
The Children's Hospital at Westmead will soon be piloting a new smartphone app that allows patients and families to see their upcoming appointments and, in future, to access important documentation and education. Some patients at the Heart Centre for Children will be invited to try this app starting from late May.
For more information, visit the My Health Memory overview on the SCHN website.
Posted by Nina Klug
on 2 February 2017
From the Heart is an Australia and New Zealand Fontan Registry research study open to children, young people and adults with a Fontan circulation, and their parents and siblings.
The study is focused on better understanding the health, wellbeing and experiences of people of all ages with a Fontan circulation, as well as the experiences of their parents, brothers and sisters. The study is coordinated by Laura Mitchell at the Heart Centre for Children and the University of NSW in Sydney, in collaboration with the ANZ Fontan Registry and involves filling in one questionnaire at home.
If you or your child are a part of the ANZ Fontan Registry and would like to know more about how to participate in this study, please contact Laura Mitchell on 1800 025 509 (free call from anywhere in Australia) or send an email to: fromtheheart@mcri.edu.au
Click here to take a look at our latest study newsletter.
Warmly,
Laura and the From the Heart study team
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Posted by Kylie Flament
on 2 July 2016
Just two weeks to go until the Mending Small Hearts gala dinner on 16 July. This wonderful event sold out several weeks ago and promises to be a great evening. A huge thank you to the organisers. We look forward to seeing you on the night!
For more information, head to the Mending Small Hearts Facebook page.
Posted by Kylie Flament
on 29 June 2016
Harley was one of our patients who sadly passed away just recently. His family and friends are honouring his life by selling "Harley is my Heart Hero" t-shirts and doing a series of fundraisers.
The Facebook page is available here, including Harley's story. The family made the news with their fundraising efforts, and we cannot thank them enough for supporting the work that we do at the Heart Centre for Children. Harley's memory will certainly live on.
Posted by Kylie Flament
on 3 May 2016
We were very excited to see one of our families in the news, and to hear about the Mending Small Hearts gala dinner they are putting together.
The goal of the Mending Small Hearts charity event is to raise money towards new equipment two ECG machines and a cardiac ultrasound machine.
The hospital treats up to 3500 children with congenital heart disease each year.
Mrs Roy says despite the ongoing challenges, Ethan is a happy baby.
"He's easygoing, and takes everything in his stride," she said.
"He has an amazing team of carers, so we want to give back to say thanks for everybody who has effectively saved his life."
The gala dinner is on July 16 at Doltone House, Sylvania Waters.
Contributions can be made through monetary donations, vouchers or goods for a silent auction and raffle, or table sponsorship.
Click here to read Ethan's full story and how his family are helping us.
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Posted by Kylie Flament
on 22 April 2016
We held a celebratory event on Monday to thank the major donors and fundraisers who made the purchase of a new Heart Lung Machine possible. Over 700 people contributed to the funds needed to get this machine, which acts as the heart and lungs for a patient during bypass surgery. We were overwhelmed by the generosity of the community, both in dollar value and in the time and effort that went in to so many fundraising events. Thank you all.
This video explains a little more about how much it means to us:
Posted by Kylie Flament
on 11 January 2016
One of our patients, little Abdalah, appeared in the Parramatta Sun last week. Abdalah had a heart transplant last year and as his Mum says, "now he's very good, he's a happy, normal little boy". Read the full story at:
http://www.parramattasun.com.au/story/3647423/were-very-lucky-hes-with-us-today/
Posted by Kylie Flament
on 11 November 2015
On Sunday 18th October 2015, the Heart Centre for Children (HCfC) at The Children's Hospital at Westmead hosted the second annual Australian and New Zealand Fontan Registry Family Education Day. The HCfC Family Support Team was delighted to provide a workshop for young people who have had the Fontan operation and their siblings. Six young people participated in the day, which was jam-packed with a mix of education sessions and fun activities, as well as a few surprises! The interactive workshop provided an opportunity for young people to meet and share experiences with one another, while learning more about the Fontan operation in a fun and supportive environment.
For photos, information about and feedback from the day - see our newsletter here.
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