Magda Singh at home with her two sons Damian (left) and Dominic (right), where she spoke of the support they receive from Acorns Acorns Children’s Hospice’s new Lantern Walk, taking place on Saturday 12th October, will see participants walk a 12km route around Walsall, each holding their own battery-operated lantern.
They will reach the Walsall Arboretum at dusk to be greeted by music and a laser light display over the lake. The event will support hundreds of children in the area who have a life limiting or life threatening condition, just like Damian Singh.
Five year old Damian was born with a heart problem. After undergoing a third open heart surgery aged four, he had a cardiac arrest and fell unconscious for 80 minutes. Damian was put on a life support machine and had to spend ten weeks in intensive care, and six months in hospital in total.
Damian’s mum Magda said: “The doctors were 100% convinced that he’d wake up from the cardiac arrest with brain damage… we were told to forget the boy we knew because he wasn’t coming back. For me, he is a miracle, because he woke up and he was the same. The doctors were checking and re-checking his brain waves as they just couldn’t believe he woke up fine after everything that happened.”
However the cardiac arrest was the beginning of a range of complex physical health problems for Damian, as his kidneys, lungs and heart started to malfunction. Now, he has been diagnosed with end stage heart failure, a serious defect which requires a heart transplant. But because of his complex condition Damian does not qualify, so Magda and dad Ram must help him live with and manage his condition, which is both life limiting and threatening.
Acorns provides specialist palliative care services to help children like Damian. The hospice provides short breaks, respite services and psychosocial support, also ensuring the whole family is looked after.
Magda continued: “I am Damian’s main carer and it really is a 24/7 job. So having a bit of respite and having someone to talk to is really nice, because it can feel very lonely at times. When we go to Acorns there’s always lots of caring staff there who know how you feel, how it is for the carer as well as the sick person. It’s sometimes hard to talk but you always feel better, like, “oh someone understands me.”
Because his condition is so complex Damian has to take medicines 10 times a day. He is on oxygen during the day and has a breathing mask at night which blows air pressure through to his lungs. He also has his feeds through a naso-gastric tube.
“It’s all such a lot to ask of a little five year old boy.”
Damian’s fragile health means there are many limitations to his lifestyle and he must be constantly monitored by Magda throughout the day.
“He’s overcome a lot for such a small boy, he’s so full of life and he has this huge fighting spirit… but there are still days when he’s very poorly so I have to constantly keep my eye on him, and pick up on any small signs telling me something’s wrong. He just wants to run around and play, he’s too young to realise he has a heart condition and doesn’t understand he has to pace himself.
“It’s so hard for us to do anything as a family, we can’t really travel anywhere and our whole life revolves around hospital appointments and check-ups. It’s very hard to plan anything ahead for more than two weeks. I feel like we always need to be near to a hospital because Damian can get very sick very quickly.
“He’s very sociable and likes playing with other children and loves attention. But he couldn’t start school this year because he was too poorly so we’re in the house all the time, and it can feel a bit trapped and isolated.”
Damian comes to the hospice for regular short breaks, and his whole family including younger brother Dominic, are able to join him.
“For us, getting away from the house even for a day and doing things together as a family, is invaluable. Damian absolutely loves it at Acorns, he always has a great time – we all do. When we visited the hospice we weren’t sure what it was going to be like, but we loved it straight away.
“Damian loves swimming. For such a long time he was asking after a swimming pool. We tried the local pool but they weren’t very keen on him going as the facilities just couldn’t cater for such a poorly child. Now we can use the hydrotherapy pool at the hospice which is brilliant as we can have sessions together as a family and the kids absolutely love it – they always look forward to it.”
The hydrotherapy pool can be used for physiotherapy, relaxation and fun. The water is warm and the pool is equipped with specialist facilities such as hoists and ramps so that even children with very severe conditions are able to use them.
“Being able to do the simple things like going for a swim is amazing for us…We have to be so careful with Damian and keep him in a safe environment, but at Acorns we can relax because it’s exactly that.”
Acorns Children’s Hospice press information, please tel: 01564 825000
Note to editors:
Due to the sensitive nature of Acorns care services it refrains from using the words ‘terminal’ or ‘terminally ill’ in its press releases and public communications when describing the children who use Acorns and the conditions that they have. Instead, Acorns uses the words ‘life limited’, ‘life limiting’, or ‘life threatening’ – terms that are used by medical experts at the point of diagnosis of the child, and which are commonly used in the UK’s children’s hospice movement and paediatric palliative care communications. Acorns kindly requests that you respect this in your communications when referring to Acorns Children’s Hospice. Acorns children have a lot of living to do. Thank you.
Acorns offers a network of care and support to children who have life limiting or life threatening conditions and their families, at its hospices in Birmingham (Selly Oak), Walsall and Worcester, and through its community team who offer support at home. Children can stay at the hospices for short breaks, emergency and end-of-life care. The community team give support to the family 24 hours a day, seven days a week.
There is no charge for Acorns’ service but running costs stand at £7,500 per day per hospice that’s £750 per bed. The charity relies on voluntary income for the majority of the funding required to run its care services.
To find out more about Acorns, please visit www.acorns.org.uk
PR & Communications Assistant
Acorns Children’s Hospice
Tel: 01564 825000 (ext. 5088)
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Acorns Children’s Hospice Trust. Registered Office – Drakes Court, Alcester Road, Wythall, Birmingham, B47 6JR Registered in England Number 2036103. Registered charity Number 700859.