Help us make every precious moment count for a family with a terminally ill child. Time for children like Ella is precious but with the support of Helen & Douglas House families can focus on spending time together and making special memories.
When someone you love is terminally ill at Christmas, all of your usual traditions and plans are turned upside down as time becomes more precious than ever. For Richard and his family, it’s also a time full of worries about potential health issues that his daughter Ella may face during the colder months.
‘I’m Richard and I’d like to tell you about our amazing nine year old daughter, Ella, and how her diagnosis changed our lives.
Three months after she was born, I was on my way to work when my wife called me to explain that something was wrong with Ella. We had thought our daughter may have experienced a seizure the previous night, and many seizures later, tests began to reveal the cause of the problem. Eventually, it was discovered that our daughter had a genetic disorder – 1p36 micro-deletion syndrome.
Ella’s health challenges have been difficult to manage, and it has become hard to control the numerous forms of epilepsy that she suffers from. We may never know what caused this, and after having our own genes tested it was discovered that there was no hereditary link between us and our daughter’s condition – it could have happened to anyone.
From the day we arrived for our first stay, back in 2013, Helen & Douglas House has supported us, focusing not only on the well-being of the child, but also the recovery of weary parents.
At Christmas they create a very special environment, giving us time as a family and offering experiences that one day, might just be precious memories. Ella has been introduced to reindeer, surrounded by fairy princesses, and has enjoyed adding her own unique voice to festive songs that are played, often whilst attempting to dislodge a seasonal headband with a well-timed sweep of her head!
This Christmas, our stay at Helen & Douglas House will give us the opportunity to have some respite whilst Ella is properly cared for, and give us chance to make new festive memories and enjoy Christmas traditions as a family. It also will be time to be thankful as Ella is on new epilepsy medication and is becoming increasingly responsive.’
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‘An arrangement of soft sea creatures surrounded her. Two weeks earlier, Ella was on her way to hospital by ambulance. Her appearance was that of a child who had just emerged from the sea; colourless, breathless and retreating from something that was trying to consume her.
The hours had passed in a similar way before. We waited overnight, with our youngest clinging to some toys as her sister was put on life-support, just along the corridor, then carefully prepared for her trip to intensive care.
Every day, I resided beside her bed, sometimes adjusting a pillow, or holding a hand – each action bringing a small victory. One of my greatest gifts in life had been almost motionless for many days, only occasionally waiving an arm or trying to force a call from a throat muffled by infection and swelling.’ - Words by Richard, Ella’s Daddy