Swiss Alpine Davos Ultra Marathon; 28th July

July 11th, 2012

Swiss Alpine Davos Ultra Marathon,28th July; Jacqueline Toal will be travelling to Switzerland to undertake this marathon to raise money for Children’s Heartbeat Trust

Update re: Safe & Sustainable review

July 11th, 2012

The Health & Social Care Board have been in touch with the charity to let us know that they have received the report from the Safe & Sustainable review teams visit on 23 & 24 April and have forwarded to the Department of Health for consideration.

The publication date of the report has as yet not been agreed. We will keep you all updated on any progress with this.

Children’s MRI Scanner Appeal – £1M down, £1M to go!

July 5th, 2012

Samuel Hill from Newtownstuart is pictured with Sarah Quinlan from the Children’s Heartbeat Trust as he gives Super Scan man a ‘high five’ to celebrate the announcement that the ‘Children’s MRI Scanner Appeal’,has raised £1m of the £2m needed to purchase an MRI Scanner for the Royal Belfast Hospital for Sick Children.

Oran Creaney with Martina Purdy and Marie-Louise Connelly from the BBC who are dancing in the Royal Does Strictly event for the MRI Scanner this November

£1M DOWN £1M TO GO!

The four charities involved in the ‘Children’s MRI Scanner Appeal’ have announced that they are half way to raising the £2m needed to purchase an MRI Scanner for the Royal Belfast Hospital for Sick Children.

The hospital is currently the only children’s hospital in the UK and Ireland that does not have its own MRI Scanner and the facility will be dedicated to the diagnosis and treatment of sick and injured children in Northern Ireland.

Sarah Quinlan from the Children’s Heartbeat Trust, which is one of the charities involved in the appeal said, “We are delighted with the response to the Children’s MRI Scanner Appeal to date. The generosity of the Northern Irish public who have organised countless fundraisers across the country and given so many donations to the Appeal is overwhelming. Thank you so much to everyone who has contributed to getting the Appeal to this half-way mark and supporting our aim of purchasing an MRI Scanner for the Royal Belfast Hospital for Sick Children.”

Some of the fundraising events which have taken place across Northern Ireland for the appeal so far include, a duck race, peace bridge sponsored walks in Derry, Quids for Kids Day in partnership with Tesco, Tayto on-packet fundraising, Gelvin farmers tractor pull, abseiling from the Obel building in Belfast and static marathons.

Another key corporate event taking place in aid of the appeal is ‘The Royal Does Strictly’, sponsored by Kingsbridge Private Hospital. This exciting event will see six local personalities team up with members of staff from the Belfast Health and Social Care Trust and is being held on 10th November 2012 at Titanic Belfast.

For further information on the appeal and events including ‘The Royal Does Strictly’ visit www.mriscannerappel.org or Text SCAN £3 to 70444 to donate £3 to the Appeal.

Charity helps Investigations Staff at Clark Clinic keep children happy!

July 2nd, 2012

Jayne and Fiona from Clark Clinic Investigations Team

Jayne & Fiona from the Clark Clinic Investigations Team with the goodies purchased by the charity to help keep children getting ECG’s distracted both in Clark Clinic and at outpatients..

Families help fund new VIVID Q Portable Echo Machine for Clark Clinic

June 15th, 2012

A big thank you to the Gallagher, Mahon and Tucker families, who helped raise the funds to buy a VIVID Q Portable Echo Machine for Clark Clinic.

Each of these families has lost a child to a heart condition, which makes their fundraising and support for the charity even more inspiring. Children’s Heartbeat Trust recently held a presentation in Clark Clinic to thank the families.

At the presentation, Dr Frank Casey (Consultant Paediatric Cardiologist) showed the families how the machine worked and how important it is in the daily work of Clark Clinic. The children that these funds were raised in memory of are honored on a plaque placed on the machine reading;

Donated in loving memory of

Cody Gallagher (13 months)
Cailean Mahon (6 weeks)
Eoin Tucker (9 weeks)

by their family and friends

The new VIVID Q portable echo machine is a top of the range piece of equipment that allows the clinicians to take high quality echoes at outpatients and at the bedsides of children in Clark Clinic. It will greatly aid the diagnosis and treatment of other children with congenital heart disease in Northern Ireland.

Dr Frank Casey shows the Gallagher, Mahon and Tucker families the VIVID Q Portable Echo Machine

The Gallagher family

The Mahon family

The Tucker Family

Fishing Competition & BBQ; 30 June 2012; Kilgad Fishery

May 23rd, 2012

Fishing Competition & BBQ; 30 June 2012; Kilgad Fishery

Willowbreeze Angling Syndicate are hosting this fishing competition and BBQ with the inaugural presentation of the Children’s Heartbeat Trust plaque to the winner. If you would like to take part please contact willowbreezeanglingsyndicate@yahoo.com

Collection Day; 9 June 2012; Larne

May 23rd, 2012

Collection Day; 9 June 2012; Larne Centre
If you would like to help collect on this Flag Day please contact info@childrensheartbeattrust.org/ 07584164815

Antrim Rose, Marcella Walsh selects Children’s Heartbeat as her charity

May 23rd, 2012

Marcella Walsh, the Antrim Rose of Tralee 2012 has selected Children’s Heartbeat Trust as her charity. The charity is really close to her heart as her little cousin who had a complex heart condition passed away earlier on this year. Over Children’s Heart Week, Marcella came up to visit Clark Clinic and see the fantastic work of the doctors and nurses that the charity supports.

The Rose of Tralee for Antrim, Marcella Walsh with Catherine & baby Owen Malcomson

Antrim Rose, Marcella with Lorraine and baby Ava Braniff in Clark Clinic

Staff Nurse Catherine Michaelides showed the Antrim Rose, Marcella around Clark Clinic on her visit

Tilly and Lewis Greenaway joined their friend James Galloway to pose with the very glam Antrim Rose, Marcella as they waited to be seen in Clark Clinic!

Tilly and Lewis Greenaway joined their friend James Galloway to pose with the very glam Antrim Rose, Marcella as they waited to be seen in Clark Clinic!

Children’s Heart Week -Young artists on show in the heart of Belfast

May 16th, 2012

Children’s Heart Week kicked off with winning exhibition of hearts from across Northern Ireland at Belfast City Hall.

Zoe Fleck (9) & Kelsie Robinson (20 months) at the Children's Arbeat Exhibition in Belfast City Hall for Children's Heart Week

The Lord Mayor of Belfast with Zoe Fleck and Sarah Quinlan

Belfast Mayor Niall Ó Donnghaile joined Children’s Heartbeat Trust’s Executive Officer Sarah Quinlan and heart children, Kelsie Connolly and Zoe Fleck at Belfast City Hall today to launch the inaugural Children’s Heartbeat Trust Heart Week Art exhibition.

The exhibition is formed of over 300 hearts, drawn by children from across Northern Ireland aged between 4 and 10 and is on display in the East Wing of the famous building. The competition was launched in March with ten finalists shortlisted to four overall winners. The four winners are; Jessie-Ann Gault (6), Daniel Hynes (6), Chloe Whitford (7) and Zoe Fleck (9).

Mayor Niall Ó Donnghaile opened the exhibition and said: “This is a very impressive exhibition and everyone who participated is to be congratulated on their fantastic work.

“You are helping many others suffering heart problems because this exhibition will be seen by the thousands of people who visit city hall every week and I hope it will make them think about, and want to support, the great work done by the Children’s Heartbeat Trust.

“I am thrilled that all of you could come here today for the opening of the exhibition and to enjoy Belfast City Hall. Don’t forget to tell all your friends about the exhibition, I intend to tell all of mine about it,” he added.

Children’s Heartbeat Trust Executive Officer Sarah Quinlan said: “This year for the first time we launched a competition to celebrate Children’s Heart Week and we are delighted with the response. Children’s Heartbeat Trust supports children with heart disease and their families across Northern Ireland – this is the most common birth defect which is treated through medical and surgical support at Belfast’s Clarke Clinic.

“Today’s competition includes work by many children who have suffered from congenital heart disease as well as those undergoing treatment at the moment. I would like to thank all our participants and offer special congratulations to our winners,” she added.

The exhibition runs from Monday 14th to Friday 18th at Belfast’s City Hall.

Update re: Paediatric Cardiac Services Review – Katie Boyd

April 19th, 2012

Thank you so much for all your letters/ email and facebook posts for us to submit to the review panel – the response has been really remarkable and very poignant.

If you haven’t had a chance yet to send in your thoughts and experiences please do – it will really help us present the strongest case and support for the entire scope of paediatric cardiac services offered by Clark Clinic.

We will have the opportunity to meet with the panel on Tuesday morning for one hour, when we will hand over all your submissions. Parents whose children are under the care of the consultants at Clark Clinic and represent different experiences will be there to meet the panel too and share their experiences and thoughts;

Katie Boyd (me) – Mum to Ollie (2) and chairperson of the charity’s parent’s committee/ group organiser for Antrim area. Ollie has received surgery for transposition of the great arteries in Royal Belfast Hospital for Sick Children (RBHSC).

Allen & Rachael McCullough – Parents to Jay (1). Jay has double outlet right ventricle of tetralogy of fallot and Down’s syndrome. Jay has had surgery in Belfast (RBHSC) and his next scheduled surgery will be in Birmingham.

Grainne Curran – Mum to Kate, Meabh and Luke. Meabh (3) has cardiomyopathy and receives all her treatment and care at Clark Clinic.

Jean Hill – Mum to Camryn and Rachael/ group organiser for Belfast area. Rachael (4) had surgery for transposition of the great arteries in Our Lady’s Children’s Hospital, Dublin.

Sinead Campbell – Mum to Shea and Nathan/ group organiser for South Down. Nathan (2) has hypoplastic left heart and to date has had two surgeries in Birmingham Children’s Hospital.

Eamon McLaughlin –Dad to Cathal (6) and member of Omagh family group. Cathal has Down’s syndrome and has had surgery in Belfast for tetralogy of fallot.

Recent correspondance from the Health and Social Care Board who have commissioned this panel states.

“”The independent expert panel will be chaired by Professor Sir Ian Kennedy and will include clinicians with a background in the care of children with complex heart conditions. The panel will visit the centre and meet with clinicians, families and parent group representatives during April. They will also consider all relevant information, including material provided by the Royal hospitals, before compiling a report which will be forwarded to the HSC Board by the end of May 2012.

This review is separate to the Safe and Sustainable review of children’s congenital heart services in England. However, the review will consider the current services provided in Belfast, taking account of the Safe and Sustainable national quality standards, which have been endorsed by the relevant professional associations in the United Kingdom.””

Our key messages again are;

- We have complete confidence in the medical staff and services which support the treatment of children with congenital heart disease at the Royal Belfast Hospital for Sick Children.

- It is essential that wherever possible, families in Northern Ireland can access surgery in Belfast.

- Surgery must stay in Belfast. We believe that the best care for our children would be the continuance of the network arrangement with Dublin, and ask that more resources be put into an all Ireland surgical service, with surgery carried out over the two sites. This means the surgeon based in Belfast would be working as part of a strong all Ireland surgical team.

- The practical and emotional consequences of stopping surgery in Belfast for our children, families and indeed future parents and families affected by congenital heart disease is incomprehensible and extremely detrimental to overall family welfare considerations.

For more info on the Safe & Sustainable review in England visit http://www.specialisedservices.nhs.uk/safeandsustainable

Thanks so much for your support with this.

Katie