Mayor of Calderdale talks about the personal loss that made him choose the Children's Heart Surgery Fund as one of his nominated charities
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He and his wife tragically lost their first son when he was just 16 to congenital heart disease (CHD), and Councillor Evans chose CHSF as one of his nominated charities for his year in office.
Coun Evans said: “We all still miss Tudor, but he was able to pack so much into his tragically short life - as a result of the research, skill and care provided through the Paediatric Heart Unit at the LGI who, in turn, were supported by CHSF.
"Between them, they had delivered on their early strap-line ‘Every Child, a Childhood’ and, as a result, we could think of no one better than the CHSF to nominate as one of our charities.”
CHSF supports babies, children and adults with CHD from all across Yorkshire, the Humber, North Lincolnshire and North Derbyshire. The charity provides vital medical equipment, family support, ward facilities, staffing and training for both the Leeds Congenital Heart Unit (LCHU), which is the region’s specialist centre for CHD, and the region’s outreach clinics including Calderdale Royal.
Hipperholme toddler Max Brierley had open heart surgery at just four weeks old. His condition of Truncus Arteriosus was diagnosed following an anomaly at mum Amy’s 20-week scan, and the family were referred to the LCHU.
Amy said: “The support provided by the hospital, and CHSF has been incredible. From them providing accommodation so we could be near our little boy during his recovery, to toys and equipment on the ward, emotional support and of course a Katie Bear and medal.”
CHSF funded the training of sonographers at Calderdale Royal last year. The training improves the prenatal detection of CHD using ultrasound at routine 20-week scans.
Early detection of congenital heart defects in babies greatly improves their chances of survival.
CHSF has also funded a Paediatric Cardiology Nurse Specialist funded at Calderdale Royal, which is another example of regional support provided by the charity. This nurse helps to look after patients who live close to the hospital meaning young patients don’t have to make the round trip to Leeds for advice and routine check-ups.
CHSF’s marketing manager Andy McNally said: “We are incredibly grateful to the new mayor and mayoress for helping the region’s congenital heart patients and their families in the wake of their tragic loss. Their commitment to our cause shines through, as they understand the diverse range of people affected by this disease, and the support needed for the whole family unit.”
CHD is the most common birth defect and cause of infant mortality affecting almost one per cent of new-born babies annually. Over 17,000 CHD patients of all ages are cared for by the Yorkshire and Humber CHD network every year, which includes the Unit in Leeds and all the outreach clinics across the region.
Forget Me Not Children’s Hospice supports families facing or living with the loss of their child across West Yorkshire. By providing not only expert clinical care and therapy, but also a helping hand, listening ear and a place to be together, Forget Me Not helps families to make the most of every moment. And by doing so, it makes a difference that lasts a lifetime.
Forget Me Not Children’s Hospice was nominated by the Deputy Mayoress, Councillor Sue Holdsworth.
Coun Holdsworth said: "Forget Me Not Children’s Hospice provides so many services to support children, parents, carers, families and friends during what must be the most stressful and devastating time for little ones and the people who love them.
"I have been fortunate not to have been in that position, but I have a close friend who suffered such a loss.
"Forget Me Not supported her during this awful time, and subsequently she arranged a large number of fundraising events for them. I want to carry on helping Forget Me Not in memory of her lost child.”
Gemma Redford, in-memory fundraiser at Forget Me Not Children’s Hospice, added: “We’re so grateful to the Mayor and Mayoress of Calderdale for choosing to support Forget Me Not.
"Only a tiny fraction of the funds we need to run our children’s hospice comes from the government or NHS, so we’re reliant on the support of the local community to help us continue to provide vital support to the children and families who need us.”
To donate, and for more information on the Mayor of Calderdale and his Just Giving campaign for Children’s Heart Surgery Fund and Forget Me Not Children’s Hospice, you can visit https://www.justgiving.com/team/mayor-of-calderdale-charity-appeal-2324.