Finley was born in 2008 and has been coming to Helen & Douglas House since he was two years old. He lives in Bicester with his mum and dad and younger sister Lucie. Finley was born with a rare genetic condition, GINS1, which means that his growth is restricted, and he can be susceptible to infection. Despite this, Finley is a bundle of energy and a well-known character at the hospice.
Before the Covid-19 pandemic, Finley, together with his mum Michaela and little sister Lucie, all used to enjoy regular respite stays at Helen & Douglas House. Coming to the hospice gave them chance to enjoy time together in a safe familiar space. It also enabled his mum to do things with his little sister, Lucie, such as going into town together and get some respite from caring for Finley. Michaela didn’t mind leaving Finley at the hospice as she knew he would be looked after by the care team in a safe environment.
The past year
Finley and his family first came to the hospice after being referred to us by their community nursing team. It was at a time early in his diagnosis, when everything was up in the air, and they didn’t know what was going on. The hospice quickly became a vital support network for them and a familiar happy place where they were able to make memories together as a family.
The past year, as a result of the pandemic, has been quite a difficult time for many of us, including Finley and his family. To keep Finley safe, his family have isolated themselves at home for the majority of the time. This has meant that he hasn’t gone to school (in person) very much, and has even transitioned into secondary education in that time!
During lockdown, here at Helen & Douglas House we have been caring for more children at home, than ever before, with increased visits from our outreach nurses, alongside our continued care at the hospice. To support Finley’s family (and many others) at home, we sent them a variety of parcels with donated items such as food essentials and children games, as well as other crafts and activities. As well as this, Finley’s sister Lucie has been involved with some of the online sibling activities to help make sure she is coping.
‘Over lockdown we received regular phone calls from the hospice to check how we were. But the thing that overwhelmed us was the generosity, through the hamper parcels that have been delivered to us on several occasions during the past year. They each included essential items that we needed to help us through the difficult days’. Michaela, Finley’s mum.
A clip of Finley and Lucie on their trampoline at home, filmed last year when we were all in lockdown
Coming back to the hospice
And then, after a long year of not being able to visit Helen & Douglas House, Finley and his family were finally able to come back for a day visit in March 2021. Finley had been in hospital in February to have his new immune suppressant IV course. That is when they saw Dr Hannah from the hospice, who felt after he had been in hospital it would be good for him to start coming back to the hospice for supportive day visits. Since then they have been for several visits, but it is still quite different to the regular respite stays that they used to have. However, as we move forward we hope to see more of our children and families, like Finley’s, being able to come out of isolation and be able to visit the hospice to get the full benefit of the support and care we can offer.
Whilst things are still a little different at the hospice at the moment, when a child visits they are currently only allowed one parent to stay with them for the day and are often given two connecting rooms to avoid them sharing different areas with other children. On Finley’s last visit to Helen & Douglas House he enjoyed doing some of his favourite things like playing Minecraft in his room and baking cheese stars. When they are at home, often family life takes over and means that Finley doesn’t get as much time or space, to enjoy activities like these, so his visits give him one-to-one care and respite from home life. The visits also give mum Michaela the chance to get a much-needed rest from the worry of having a vulnerable child.
Usually, Finley’s sister Lucie (pictured above with Finley on a visit to the hospice, prior to Covid-19) joins the family for visits to the hospice, but since lockdown has been unable to join them. However, she has been able to part of the sibling support online meetings, this has helped her engage with children similar to her age and situation. As lockdown is now eased, we are now looking forward to welcoming whole families back in. Lucie looks forward to when she can come back to the hospice again with her family and be part of the sibling group in person.
Michaela continued; ‘Coming to Helen & Douglas House makes such a difference for us all. It allows me to do things with Finley, and with his sister Lucie, and also gives me some time to simply rest. It’s a little taste of heaven and the staff here are wonderful. I can’t thank them enough.’
Your help means we can continue to make a difference when it matters the most
As a charity, Helen & Douglas House need your donations to continue to help children like Finley and his family. Finley’s mum has helped raise money for the hospice by asking her local corner shop to have a donation pot next to the till, collecting donations at her 50th birthday party and by holding a teddy tombola event.