Your support throughout the coronavirus pandemic has meant the world to the families we look after. It’s meant that we can stay in touch and make sure they know that they aren’t alone, while still providing services that are vital to the wellbeing of the whole family. But as the world starts to reopen, these families have to be more cautious than ever and endure isolation like most of us will never experience.
But if you thought that this would stop them from showing us their support, you couldn’t be more wrong.
Vanessa Davies from Swansea, whose daughter Amelia (13) suffers with uncontrolled epilepsy which means medication cannot stop her seizures, explains why the family wanted to go that extra mile.
“Tŷ Hafan took us under their angel wings back in the summer of 2018 and have since been providing Amelia, and us, with beautiful breaks away from home.
“She’s recently been fitted with a pacemaker to help her with her seizures and we’ve already seen life changing results. Her fatal seizures have now reduced from almost one a day to around four a month. It’s made such a difference to her energy levels and her happiness – she now laughs every day.”
Thanks to the improvements to her condition, Amelia set off on the epic seven hour long 10-mile walk from Swansea’s Civic Centre along the waterfront to the pier and back again with her mum and grandma at her side. To date she has raised almost £1,500 for Tŷ Hafan.
Vanessa added, “The play workers have been amazing while we’ve been in lockdown; they’ve delivered virtual music, story time and play sessions for Amelia at home. Tŷ Hafan has been our lifeline and the teams have been with us every step of the way through this crisis.”
Elain James (10), from Aberystwyth, who suffers with a genetic disorder called 22q11.2 Deletion Syndrome has also bravely taken on an isolation challenge with her mum in support of her hospice.
Elain’s mum, Bridget Harpwood, pushed Elain’s buggy 26.2 miles, the equivalent of a marathon, and has raised almost £7,000 for Tŷ Hafan with the help of Elain’s local fundraising team ‘ApêlElain’.
Bridget explained, “Pushing that buggy up hills and on and off kerbs is one of the hardest things I’ve ever done. It weighs about 60 kilos. But it’s been a brilliant experience – and Elain’s always loved going in the buggy.”
Elain’s disorder has caused a life-limiting heart condition, global development delay, autism, an impaired immune system and low muscle tone which also means that she struggles to walk for long periods of time.
“Tŷ Hafan holds an incredibly special place in our hearts and will continue to do so throughout Elain’s life.” Bridget added, “We are proud to contribute something back to help the hospice at this incredibly difficult time for them.”
Children taking extra shielding precautions have also clubbed together by creating bright and colourful posters in support of Tŷ Hafan to get those in their local community behind the emergency appeal.
These amazing children and their families really capture the spirit of Tŷ Hafan and, regardless of the difficulties they face every day (never more so than now), show such an inspiring commitment to the charity and shows us how important what we do for them is.