Finley's Story
Finley first came to Demelza's Kent hospice when he was one, and now returns every year for short breaks. Dad Lee said: “We’ll go away with the rest of the family for our holiday, and he comes here for his. It’s too much of a worry to take him abroad with his health.”
Short breaks at Demelza
‘We feel that we need a break from day-to-day care, even just giving medication at regular intervals throughout the day. It’s nice to get away and escape our day-to-day life. We don’t worry about Finley while we’re away because we know he’s in good hands at Demelza. My mum will ring to check and see how he’s doing and drop us a text to update us, but it’s nice to have that complete break and switch off now and then. We don’t get any other help, apart from those ten days a year.”
Conor and Ellie have never been to sibling groups but they do come to the family days. Chloe’s made friends with a couple of the other mums. Fin’s favourite thing at Demelza is probably swimming in the hydro pool so Demelza tries to do as much as possible of that when he stays for short breaks.
Lee’s mum used to help out a lot but she’s getting older and so is Finley, which means he is becoming harder to lift. Chloe is Fin’s full-time carer, she used to work part-time but misses the adult interaction and tries to get out for lunch with her friends just to try and get a bit of normality.
Fin, who cannot speak and is registered blind, also has cerebral palsy and up to 30 epileptic seizures a day. “We don’t get any other help and we need a break from being Fin’s carer,” explains Lee. “It’s a full-time job and now he’s older, it’s getting even harder to lift him. We know Fin is in good hands at Demelza.”
Fin gets to enjoy his favourite pastime while on holiday at Demelza – swimming in the hydro pool, which would not be possible for him to do with his family anywhere else. “I don’t know what we would do without Demelza. It’s so good for Fin to get out the house and have a change of scenery.”
Finley's diagnosis
When Chloe was pregnant with Fin she was unaware she caught CMV (cytomegalovirus) in the first trimester. 80% of the population have had CMV, most unaware they have it as it presents as a common cold.
It’s not harmful to anyone who catches it, but if it is contracted whilst pregnant it is damaging to the unborn baby and their development. Chloe hadn’t contracted the virus prior to this pregnancy, so she had not built up an immunity and so passed it onto Finley.
Chloe was tested throughout her pregnancy as they picked up a few abnormalities. Had these symptoms been put together, they may have known it was a common side effect of CMV pregnancies. The family didn’t actually know about it until after he was born with a red rash, which is when it was first picked up and then confirmed by tests.
CMV was tested for by the TORCH screen during pregnancy at 20 weeks, but it showed Chloe had antibodies of the virus in her blood, so they assumed the CMV infection was from prior to the pregnancy. It was established after Fin was born that the virus may have struck at around six to eight weeks into her pregnancy:
“Because we didn’t know anything about it we thought Fin was a healthy child until a few days after he was born and then we were transferred to St Marys to the infectious diseases unit, where Fin was given just a few days to live. Ellie and Conor were told to say their goodbyes, and our families came up to say goodbye, and we were offered to be transferred to Demelza for end of life care.
"We all expected that once Fin’s oxygen was turned off, he would fall asleep, but he never did. Eight years later, he’s still going. It was absolutely gut-wrenching to go through that because Fin is my first child.”
Fin is registered blind with CVI (Cortical Visual Impairment): "We think he’s got some vision, but where he’s brain-damaged we wouldn’t know he can’t translate what he’s looking at and obviously he’s non-verbal so he can’t tell us, but he has his own way of communicating: he moans if he is unhappy or shouts and makes a few verbalisations if he’s happy.”
Sometimes too much sensory overload can trigger a seizure - his average is 38, sometimes he can have up to 90-100 a day ranging from little spasms to full-on tonic-clonic seizures.
“They don’t seem to phase him, at all. He’s tried so many meds now that have not worked and is on the waitlist for a VNS (vagus nerve stimulator) which should be done by the end of the year.
"The hardest thing is the seizures – because they’re so unpredictable, he doesn’t seem to have a trigger. You’d think it would be light or pain, but it’s not.” Fin has had hip surgery at the Evelina, which caused terrible pain in recovery, so it was a really tough few months for him, and it set him right back."
“Fin still has his hearing, which I’m really happy with as the most common side effect of CMV is loss of hearing which can be progressive [it’s the leading cause of childhood deafness], so that’s one thing I’d hate for him to lose what with him being blind."
"Fin loves sound and busy environments. When he was a baby he loved listening to The Elmo Song, but now he’s happy to listen to music, mainly instrumental. You can’t put a price on the care we get from Demelza. If we could pay for extra nights we would! It’s brilliant what they do.”
Help us support more families like Finley's
As a charity, Demelza is almost entirely dependent on people like you to provide the funds that keep our services going.
Please ensure every child and family can depend on us when they need us most.
