Archive for the ‘News’ Category
Check out this super catchy ECHO song that Lorraine and Fiona from Cardiac Investigations at RBHSC told us about! Some children can get very upset at the thought of a hospital visit of any kind but hopefully this song will help to turn an ECHO scan into a bit of an adventure for them! Click HERE to watch and listen to Dr Ranj’s slick performance!!!
This February is the return of our ROCK RED FRIDAY event where we encourage everyone to get involved by wearing red and helping to raise awareness and funds for our work with local heart children.
We’re calling all schools, youth clubs, organisations, businesses and individuals to get involved. Simply wear red, raise awareness and donate £1 to Childrens Heartbeat Trust.
Please feel free to post us your rock red images to facebook and twitter using the hashtag #RockRedFriday
For a fundraising pack, please email firstname.lastname@example.org or call 028 90312228.
Our next Paediatric First Aid Course with REC First Aid Trainers N.I is taking place from 9am – 5pm on Saturday 18th February 2017, Brownstown Community Centre, Portadown.
This is a fully certified 1 day course and is free to all heart families living in NI and have a child with heart disease. The feedback from this course has been fantastic with families describing the course as “Excellent hands on training, gave us the knowledge and confidence to be able to perform first aid if needed.”
Due to the nature of the training, spaces on the course are limited so if you are aged 16+ and would like to take part please don’t hesitate to book your space by emailing: email@example.com or call 07436589480.
Watch the youtube video below to see how the £2Million by the Children’s MRI Scanner Appeal has been put to use with the wonderful new MRI Scanner Unit at the Royal Belfast Hospital for Sick Children.
Over the last 18 months Dr Callaghan has been assessing exercise tolerance and daily activity levels in children with CHD, hoping to improve both exercise tolerance and daily activity levels in this group through a structured intervention programme of education and individualised exercise prescription. Dr Callaghan has not completed her research and an overview can be found below.
Three key recommendations from her research were;
It is important that families receive early education on the importance and safety of regular exercise in CHD. It is also vital that this is maintained throughout the teenage years when activity levels can decline.
Participation in regular exercise can also have a positive impact on self-esteem and development of social skills.
Even children with complex heart conditions should be encouraged to participate in regular moderate physical activity. If you have any concerns about you child participating in physical activities please ask their cardiologist about an exercise prescription form.
Congratulations to Dr Callaghan for completing this very important research and helping heart children live healthier, fitter lives!
Expanding the services available for children born with congenital heart disease and their families is essential to create a world leading service – that was the message today as the Children’s Heartbeat Trust launched their 2017-2020 Strategy document at an event in Belfast.
The charity, which was founded in 1984, helps children born with congenital heart disease and their families through a range of initiatives giving direct support as well as funding for the Clarke Clinic at the Royal Belfast Hospital for Sick Children
Speaking at the launch of the strategy document, charity Chief Executive Sarah Quinlan said:
“Over 200 children are born every year in Northern Ireland with congenital heart disease which is Northern Ireland’s most common birth defect. Many face complicated surgery to treat their conditions, including open heart surgery, at a very young age. The recent £42m investment in an all-Island Children’s Heart Surgery network will play a vital part in treating these children and to compliment this important development, we want to ensure that the wider services, from family support and youth services to research and awareness campaigning, are enhanced give heart families across Northern Ireland a world leading support and care from diagnosis until adulthood.
“Children’s Heartbeat Trust has for many years supported both the Clark Clinic and children born with congenital heart disease and their families. Our 2017-2020 Strategy document is published today following an extensive period of analysis and consultation with families, doctors, nurses, government and all of those we work with,” said Sarah.
The 2017-2020 strategy document outlines the charities key priorities in the coming years which includes:
- Increasing family support services including the development of a Family Support Hub and ensuring support for families travelling outside of Northern Ireland
- Developing youth services by expanding the programme up to 18 years of age and looking at innovative ways to respond to the needs of young people with heart disease
- Funding & supporting multidisciplinary research into heart disease in children
- Represent heart families to ensure that children are at the centre of all decisions made about the clinical services they require.
At the launch event, which was attended by clinicians, families and children with congenital heart disease, the charity’s Chair Professor Nichola Rooney also said:
“The future provision of health services across all specialties will focus on collaboration and centres of excellence. Children’s heart services are the first to be delivered on such a basis across the island of Ireland and it is vital that more and more children can avail of these services. The Children’s Heartbeat Trust will continue to expand our support for the hospital, children, their families and the work of the wider network to make sure this takes place.”
What a fantastic day we had at the Seagoe Hotel on Sunday 4th December at our Christmas Party!
We began the festivities with a VIP concert from our fave Frozen Princesses Anna and Elsa and had lots on offer from Christmas Crafts and frosty fun to making magic cookies, taking super cool sELFies and building our own marshmallow snowmen (before eating them!!) As a very special treat Santa travelled the whole way from Lapland just to come and see us…. and he even brought presents! We really enjoyed catching up with some familiar faces and welcoming some new families into our huge heart family!
Huge thankyou to all of our lovely families and helpful volunteers that came along to the event and brought lots of Christmas Spirit, we hope you all had as much fun as we did!
Hope you all have a very Merry Christmas and we look forward to seeing you all in 2017!
We are supporting a campaign being coordinated by the charity, Little Hearts Matters about making a change to DLA. This is a really important and frustrating issue for our heart families so if you have been affected please contact your local MP as below and encourage them to attend the meeting in Westminster to support having children’s heart disease recognised in the Disability Living Allowance Assessor Pack.
Help us make a change to Disability Living Allowance for children with heart disease.
Why are so many heart children turned down for DLA despite their disabilities? We think it’s partly because heart disease is not given a place in the guidance used by the people who look at claims.
On Tuesday 29th November national children’s heart and adult congenital heart charities are holding a meeting in Parliament to obtain MPs’ support in getting children’s heart disease recognised in the Disability Living Allowance Assessor pack.
We need your help to get as many MPs to attend the meeting as possible.
Please could you write to your MP and ask him or her to present you at the meeting. If you need to find your politician’s name and address, follow this link http://www.parliament.uk/mps-lords-and-offices/mps/.
You can also find an example of the kind of letter that you might send or email to your MP below. All you need to add is information about your own child, their needs and any problems you have had claiming DLA.
Link to sample letter HERE
This is your chance to help us make a change. Thank you.
Our beautiful Christmas Cards are now available to purchase! Each year they are designed by two of our wonderful heart kids and this year is no different.
A pack includes 10 cards, 5 of each design and can be purchased for £5.00 per pack.
To order, please email firstname.lastname@example.org or call 028 9031228.