“Being the sibling of a child with a life-limiting condition can be hard.”
Jessie May is a Bristol-based charity who provide specialist palliative care to terminally ill and life-limited children, and their families, in the South West. Jessie May has a team of dedicated nurses who provide palliative care during a child’s life, and provide bereavement care for families after a child’s death.
Families like those of best friends Ariana and Noah rely on the support of Jessie May. Ariana and Noah, both at only 4 years of age, have spent most of their young lives in Bristol Children’s Hospital. Although facing tough times, the two formed a beautiful friendship that touched the heart of their Jessie May nurses.
The care by the Jessie May nurses extends beyond that of the individual child, but includes the family as a whole. Especially siblings. Jessie May nurses don’t just provide specialist medical care for children like Ariana and Noah, they are there for full support (both emotionally and mentally) for the whole family.
Being the brother or sister of a child with a life-limiting condition can be hard. Time with Mum and Dad can often be compromised and there are lots of fun child activities that often aren’t possible. Particularly if the child is in and out of hospital a lot, like Ariana and Noah are.
So, what is it like to have a sister or brother who need the support of Jessie May? Especially as we head towards Christmas which is traditionally a magical time of year for all children.
Cam and Jack are the older brothers of Ariana, and they describe her as sassy, cute, lovely and funny. They say she can be a handful at times and might be on Santa’s naughty list this year, but she is also quiet when she has a poorly day. They love when their Jessie May nurse visits as it means they can spend some time doing special things together, such as going to the skatepark with their mum. Both Cam and Jack are looking forward to Christmas and their gifts but they also hope that Ariana is well as it’s been hard for them in the past when she has been in hospital.
Lorelai and Coel are Noah’s half-sister and half-brother. They describe Noah as being cute and funny and they say that Noah will be on Santa’s nice list as he is so brave. They enjoy it when their Jessie May nurse visits as they can do some things with their parents that Noah can’t do,
“It’s really nice because we get to do the things with Daddy and Beccy that we can’t do with Noah, like go swimming or to soft play. Noah can’t go there in case he gets sick. We are glad we have a Jessie May nurse because Daddy and Beccy get a break from doing medicines and stuff”
Thanks to their Jessie May nurses Noah, Ariana and their siblings are looking forward to a Christmas together, building memories and would like to wish you all a very merry Christmas.
Cam, Jack, Lorelai and Coel are between ages 8-11, if you’d like to read more of what they have to say you can read it here.
Jessie May is a Bristol-based charity that provides specialist palliative care to terminally ill and life-limited children, and their families, in the South West. The charity provides hospice at home care for terminally ill children, and was set up by the parents of Jessica May Purrington, a little girl who died at home aged 4 months, surrounded by her family and her nurses. Jessie May has a team of dedicated nurses who provide palliative care during a child’s life, and provide bereavement care for families after a child’s death. It costs around £1,300,000 to provide this care for each child, and the charity is almost entirely dependent on voluntary donations.