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Rob's CEO Blog: Every Second Counts

Fri 20th May 2022 

It’s been a couple of months since taking the role of Chief Executive of Lifelites. I’ve enjoyed every minute so far, putting myself firmly in listening mode to learn all about the unique work of the charity, what we do well, what we can do better.

Whilst there’s lots to do and exciting plans for the future, in the here and now, the thing that has affected me the most, perhaps unsurprisingly, is stories of the families and children with disabilities and life-limiting conditions that we support.

Of course, you can read case studies and speak to people, which help to build up a sense of our impact but it was only when I visited a hospice and got directly involved that the lightbulb switched on. Here’s a poignant, humbling story that brought me to tears.

Growing up, my brother and I did all the usual things that brothers do; we played; we argued; we got into all kinds of scrapes and caused my mum and dad no end of headaches that I can only fully appreciate since becoming a father myself. Despite all that, and it’s often hard to recognise it at the time, through all of these trials and tribulations we were great pals and have a unique set of shared memories. 

A week ago Lifelites' Head of Projects, Jane, came to me with a very painful story about two brothers being cared for by one of our hospice partners who were going through a particularly difficult time. ‘Difficult’ just doesn't really cut it, there just aren’t the words to convey their situation adequately. In short, both brothers are in the advanced stages of an aggressive degenerative disease that has turned the family’s life upside down. The illness is so severe that it rapidly takes away mobility and speech and in all likelihood, both brothers will pass away in a matter of weeks. 

The hospice had been in touch to seek our help to enable the brothers to play together, interact and express how they are feeling as a matter of urgency. This hospice was one of those due a new package of technology in the next few months, and with time against us, we rallied to get one item of technology - the Eyegaze - out to them immediately.

Being a small charity, with a team of seven, every team member was involved in making this happen but it was my privilege to collect and deliver the Eyegaze from our office in London directly to the hospice.

On entering the hospice, I was met by their CEO, who herself lost her son to a devastating illness, which inspired her to set up the hospice in his memory. She was so positive about Lifelites, telling me a number of stories about how our tech had empowered children in their care. It was humbling to hear such effusive praise and I thought 'you're right', but these stories are not made possible by the Lifelites team alone, it’s a team effort; our supporters; the hospice care staff; our partners across the palliative care system; the families themselves.

Collectively we recognise that, for these brothers and thousands of other children, every second counts and in painful circumstances, simple moments of joy and expressions of love really, really matter. 

So, I hope our urgent delivery will give these brothers a few days and weeks of being able to connect with each other and those around them. To soak up the love that they deserve, until they close their eyes one final time.

It is a bittersweet memory that will stay with me.

 
 

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Email: info@lifelites.org
Telephone: 0207 440 4200
Address:
Lifelites
60 Great Queen Street
London
WC2B 5AZ
Charity No: 1165791