In partnership with GUCH PA we are holding an information day for our GUCH’s (Grown Up Congenital Hearts) and young adults over 16 to provide information on living with a heart condition as an adult and giving you the opportunity to ask questions too. The event is open to GUCH’s and young people, and also any parents, family members or interested parties who would like to come along. This is a free event, please contact 01473 252007 or email@example.com to reserve your place.
The BBC ‘In Your Corner’ programme show on Monday 27 Feb highlighted the urgent need for an MRI Scanner at the Children’s Hospital. View the programme at ://www.bbc.co.uk/iplayer/episode/b01cqmn1/In_Your_Corner_Series_2_Episode_1/
There is currently limited access to MRI for sick children in Northern Ireland and demand greatly exceeds availability. Children who do receive scans are referred to another department in the adult hospitals or may even be transferred to another hospital outside of Northern Ireland. To help us raise the £2,000,000 needed for this piece of equipment please visit www.mriscannerappeal.org or make a £3 donation by texting ‘Scan’ to 70003.
You can also listen again to the Cullen family being interviewed on Talkback about the need for an MRI Scanner in the Children’s Hospital in Belfast at http://www.bbc.co.uk/iplayer/console/b01cl4fp – interview starts at 1.05:35.
We are holding a Public Meeting on Wednesday 7 March at 8:00pm at Banbridge Leisure Centre, Downshire Road, Banbridge.
The aim of this meeting is to set up a local family support group offering parent-led support and advice for parents and families of children with heart disease in the South Down area. Anyone affected by the issue of heart disease in children and young people is invited and encouraged to attend.
Liam’s Little Hearts Walk; Sat 10 March; Craigavon Area Hospital – RBHSC.
The McKee family from Rathfriland presented funds raised by the Bronte Steakhouse at a charity night and donations from the Presbyterian Churches, Rathfriland to Gillian Knox for the Children’s Heartbeat Trust.
This fundraising was motivated by little Grace McKee, who was born with a serious heart condition and is currently receiving treatment at Clark Clinic in the Royal Belfast Hospital for Sick Children. The McKee family would like to thank Leanne and Ian Clyde from the Bronte Steakhouse for their fundraising efforts and all those who donated to the charity.
We have been hearing a number of concerns in the last few days about the paediatric cardiac surgery service at the Royal Belfast Hospital for Sick Children so we asked the consultants at Clark Clinic to clarify the situation. Having received the response below we feel able to reassure parents and families that the surgical service is continuing in Belfast. Response in full below..
The surgical service for Congenital Heart Disease in Belfast is currently provided by two surgeons employed by the Belfast Trust with support where needed from two further surgeons based at Our Lady`s Hospital for Sick Children in Dublin. This network arrangement has been established to ensure that there is more comprehensive surgical cover.
The surgeons based in Belfast are Professor Fred Wood who has more than 30 years experience working as a Congenital Heart Surgeon and Mr. Chris Austin who is at present working in a Locum Consultant Capacity. Mr. Austin has spent the last year gaining further expertise in Congenital Heart Surgery in Dublin and at The Evalina Children`s Hospital in London. Interviews will be held on 5th April 2012 for a permanent appointment.
The two Dublin surgeons who operate in Belfast are Professor Mark Redmond and Mr. Lars Nolke both also very experienced Congenital Heart Surgeons.
With this arrangement the number of operations performed in Belfast for congenital heart conditions has not reduced and patients have received their surgery in a timely manner. As has been the case for many years Children with very complex diagnoses such as Hypoplastic Left Heart are transferred mainly to Birmingham Children’s Hospital. A small number of patients have also been transferred to Dublin and the Evalina Children`s Hospital in London.
The priority of the Paediatric Cardiology and Cardiac Surgical teams to ensure that children from Northern Ireland receive safe and timely treatment and we have the most robust audit and governance procedures of any centre in the U.K to continuously monitor outcomes
The McCutcheon family from Lisburn raised the fantastic sum of £4,039.75 in aid of the Children’s Heartbeat Trust by encouraging friends and family to participate in the Lisburn Fun Run, 10k and Half Marathon, and organizing a charity night in the Derriaghy Cricket Club.
The motivation behind this fundraising was little Riley McCutcheon (2) who was born with a serious heart defect, and received treatment in Clark Clinic at the Royal Belfast Hospital for Sick Children.
Stephen, Lisa and Riley McCutcheon would like to thank everyone who helped, sponsored and supported them in their fundraising efforts.
Ivan and Elaine Wilkinson recently presented a cheque to Dr Craig, from donations made in lieu of flowers, to the Children’s Heartbeat Trust and the Children’s MRI Scanner Appeal. The donations were made in memory of their baby daughter, Beth, who spent her short life (5 months) in the Royal Belfast Hospital for Sick Children.
Why not take part in a heartfelt challenge in aid of children with heart disease in Northern Ireland. ‘Liam’s Little Hearts Walk’ will take place on Saturday 10 March starting at Craigavon Area Hospital and finishing at the Royal Belfast Hospital for Sick Children (RBHSC).
The walk follows a journey made each year by countless families who have a baby born in Craigavon Area Hospital that needs to be transferred to Clark Clinic, RBHSC for emergency treatment for a heart condition. This is the second year of the walk, which was originally organised to raise funds for the Children’s Heartbeat Trust by the Clifford family from Craigavon.
Joanne Clifford said ‘The walk was initially thought up as a way to fundraise for the Children’s Heartbeat Trust and Clark Clinic at the Royal Belfast Hospital for Sick Children (RBHSC) and to say thank-you for the support and help given to our family when our son Liam was born. Liam was born in Craigavon Area Hospital on 12.03.2010 and he started to turn blue almost immediately. He was stabilised at Craigavon before being rushed to the paediatric cardiology team at the RBHSC, where he was diagnosed with pulmonary artresia, which stops deoxygenated blood from reaching his lungs and a ventricular septal defect (VSD) which is a hole in the wall of the heart. In his first year he had to undergo two open heart surgery’s which were thankfully successful. He celebrated his first birthday the same day as his dad, Gerald finished the inaugural ‘Liam’s Walk’.
‘The support offered for the families by the charity is ongoing and so wanted to make ‘Liam’s Little Hearts Walk an annual event, continuing to raise funds to support other families who have had similar experiences to ours.’
This year we will be offering personalised sponsor packs so each participant can highlight the bravery of a child they know who has heart disease and raise funds in that child’s name.
If the entire walk seems daunting, participants can choose to be part of a 4 person relay team or simply join in for as much as they can.
For further information and to get your sponsorship form please contact Sarah Quinlan on 07584 164 815, email firstname.lastname@example.org or visit www.childrensheartbeattrust.org
Maghera Cycling Club, Carn Wheelers organized a charity cycle in aid of the Children’s Heartbeat Trust, which was by all accounts a brilliant, if strenous day out! Thanks so much to all who participated and sponsored the cyclists!
The organizers of the event would like to thank those who made and/or served refreshments, the mayor of Limavady for his contribution and help towards marshalling, for those that ‘manned’ food stations, businesses who sponsored the event, the cyclists who attended the event and anyone else who contributed in any way!