Demelza is able to support families at Christmas because of our supporters, for some, what should be a happy time can turn into an anxious and uncertain time.
On Christmas Day 2014, Kate and Duncan welcomed Harry into the world and were filled with love. All seemed fine and they were set to be home with their baby son by the afternoon to enjoy a day of festivities. But it soon became clear that something wasn't right with Harry. He wouldn't feed and he had concerning eye movements which they later found out were seizures. Four days post Christmas, Harry was blue lighted by ambulance to a specialist children's hospital in London and Kate and Duncan were left clutching an empty car seat, longing to take him home.
Weeks in hospital soon turned into months with the terrifying sight of seeing Harry having up to 100-three minute seizures a day. Duncan had no option but to return to work and Kate commuted into London every day to be at Harry's side. When Duncan arrived in the evenings, they cried and clung to each other for support.
After trialling several medications, doctors were able to control Harry's seizures and the time came to take him home. The palliative care team suggested they spend some time at Demelza, Michelle, a social worker from the charity, visited and explained the support on offer to families like Harry's.
They stayed at our Eltham Hospice, Demelza SEL and staying for five days, Harry was very popular with the nurses and got lots of attention. The care team helped build Kate and Duncan's confidence by showing them how to give medications and feeds. After they left Demelza, they still had regular visits from Michelle to talk about how they were feeling and to help process all of the terrible things they had been through as a family.
Harry was diagnosed with SCN2a Encephalopathy - a rare mistake in a gene which in simple terms causes 'disease of the brain'. It's a lottery you never want to win. There's no cure, he will never walk and probably never talk. He can't grab or play but he can smile and laugh.
Harry and his parents still regularly stay at Demelza to recharge their batteries and Harry's smile is often on show. When they are not at Demelza, they know that support is at the end of the phone whenever they need it. It is not easy taking Harry to normal mother baby groups out of fear of being judged. Kate was very excited to be invited to a baby massage group at Demelza, Harry found it very calming and loved having his feet massaged.
For Kate and Duncan, their Christmas Day is now known as Harrymas Day - a day for their little boy who has defied the odds. Christmas this year will be another important time for Harry as he continues to achieve milestones they never dreamed possible. They also have another special present coming their way with Harry's little brother or sister due early 2017. Sibling support is another important aspect of Demelza's work so Kate and Duncan feel reassured knowing that both of their children will never lose out.
Any gift you can give will ensure Demelza can continue to care for families like Harry's - not just on Christmas Day, but 365 days a year.