Today sees the launch of Children's Hospice Week - the UK's only awareness and fundraising week for children with life-shortening conditions and their families, as well as the palliative care services that support them.
This year the campaign will put families first to improve public understanding of what life is really like for families caring for seriously ill children. It will also highlight how precious family time is and how the wide range of children’s palliative care services across the UK provide vital support to thousands of families and help them treasure their time together.
Nothing illustrates this better than little Euan's story - he has chronic lung disease & can need oxygen to help him breathe. Mum tells us what a lifeline Julia's House has been:
'I wanted to be seen to be coping'
"I have only just started admitting how hard it is to cope with a poorly child. I was in denial about the support I needed when Euan was born because I wanted to be seen to be coping.
Despite having a baby with chronic lung disease I started out determined to do absolutely everything myself and live a normal life.
I would load the car with his pram, the dogs, all the oxygen cylinders Euan needed and set off.
I thought ‘I will be normal, I will walk the dogs’ and I would be struggling, back bent double, lugging a pushchair piled high with heavy equipment. And I would do it every day, even though I was exhausted.
My husband Andy really wanted to help but he had to go to work."
'It was constant, day and night'
Euan wouldn’t take a bottle and had to be tube fed. I was doing this by hand with a syringe and it would take two and a half hours to get a feed into him and he needed feeding every three hours. It was constant, day and night.
Euan also suffered from severe reflux so would often vomit the feeds back up. It got to the point where I was too frightened to move him or do anything with him because I was scared it would make him sick.
I felt so anxious I just kept him as quiet and still as I could. I wasn’t having the normal life I wanted, I wasn’t having any life at all. The tiredness was so overwhelming.
I woke up crying every single day unable to cope with what was ahead of me.
The hospital referred us to Julia’s House and I was completely bowled over by they were able to offer."
'The sheer relief of finally getting some help'
"When Euan came for his first hospice care session I just howled and howled. I could not stop crying – it was the sheer relief of finally getting some help. The staff just hugged and comforted me and it was the most wonderful feeling in the world.
The next care session I went home and took the dogs for a walk – no pushchair, no heavy oxygen cylinders – and then went for lunch with a friend. The sun was shining and I just felt so liberated after all my struggling.
The few hours’ break that Julia’s House gave me felt like a holiday, it was that good.
Since then Euan and I have met up with other mums at Minimates and Housemates mornings and have learnt so many good tips from other parents. It’s not only social it is great way to exchange useful information.
Julia’s House is absolutely fantastic. I can never thank the care team enough for the support they have given my family. I don’t know how much longer I could have carried on without their trusted care and for that I will be eternally grateful."