Help create precious moments for families that need them most this Christmas.
When Amanda and Ian Harrison's first child, James, arrived in March 2008, it made that Christmas very precious for the new family. However, the following year things changed for the Harrisons forever.
When James was just 18 months old he stopped crawling, walking, standing and was struggling to sit," Amanda says. "After endless tests we were finally told the devastating news that our little boy had Infantile Batten Disease. There was no treatment and no cure.
The hardest job
Life would never be the same for the Harrisons, as James' condition means he needs constant care.
Looking after James is exhausting. It’s the hardest job I’ve ever done, but I love every moment I spend with him. There is never a time when I can think ‘Oh I can let off a bit’, and most days we usually have a strict regime, getting up at 5.30am to get James dressed and give him his medicines. He has seizures every day, and most nights Ian and I will probably get up two or three times. I find Christmas really hard, I always worry that it’s James’ last one."
Caring for James can be really tough at times, and Amanda is grateful for the network of other families that she can turn to for support and help – a network she found with our help.
We face the same challenges, anxieties and worries. It’s so important to know that Together for Short Lives is always there for us," says Amanda. "People don’t understand. Family resources provided by Together for Short Lives like their Helpline or family Facebook group provide a real lifeline for families like mine. I can talk to other parents who are struggling with the everyday challenges of living with a child who has a life-limiting condition, and can get help answering questions I would otherwise spend hours trawling through the internet to find."
Together for Short Lives can’t change the diagnosis but together with your help we can provide the support that helps families like the Harrisons make the most of precious moments.
We have a saying ‘don’t count the days, make the days count’," says Amanda. "On Christmas Day James will wake up with his two sisters, Izzy and Ruby, and they can help him open his presents. That will be really special."