An Aberdeenshire two-year-old is “defying the odds” after being diagnosed with a severe brain injury.
Tilly Cranna, from Glass, near Huntly, was born nine weeks early and diagnosed with Periventricular Leukomalacia (PVL) at just two-weeks-old.
In the two years since, her family has done everything they can to make her life as amazing as possible with support from their local community and charity Charlie House.
“She got off to a rocky start,” her mum Kerrie Baird said. “We thought she was in a good place and progressing relatively well when we got the PVL diagnosis.
“It’s a severe brain injury which affects the white matter around the ventricles. I like to describe it to people as a dodgy WiFi connection, sometimes it works and sometimes it doesn’t.”
As Tilly was born during lockdown, Miss Baird was by herself when her newborn was in neonatal.
The 30-year-old said: “I wasn’t prepared at all. The doctors never expected to see the brain injury on the scan and said they couldn’t tell what quality of life she was going to have.
“I’d never heard of PVL and cerebral palsy had never crossed my mind until that point. When you get a devastating diagnosis, all the questions go out your head.
“We were discharged with no real direction on how things might go, so I just started researching anything and everything to help her.”
‘Defying the odds’
Fast forward two-and-a-half years, and Tilly can now feed and drink herself and has a growing vocabulary.
She lives at home with her mum, dad Barry Cranna, 32, and three-year-old sister, Hallie.
“She copies everything her sister says,” Miss Baird said. “She’s the happiest little soul and is always smiling.”
In May 2021, she was diagnosed with Spastic Diplegic Cerebral Palsy and also has airway disorders and gastrointestinal issues.
The family share updates on Tilly’s journey through their online blog on Facebook and Instagram.
Miss Baird continued: “She doesn’t have the typical movements of a two-and-a-half year old, but she does have some independence which is amazing.
“We’re always questioning if we’re doing enough and constantly researching what other ways we can try to make her life easier. If I could change anything, I’d just take her pain away.
“But one positive from it all is what you find in the smallest moments. Tilly has had to put in so much work to do the things we take for granted. She’s amazing and she keeps us going.”
‘Amazing’ support from Charlie House
The mum-of-two first came across Charlie House while researching different options for support online.
“I initially thought we wouldn’t reach the criteria so I sat on it for a few weeks. After applying we got a call and they said they’d love for us to be part of the Charlie House family,” Miss Baird said.
“Those involved can relate 100% to what you’re going through. There’s nothing more valuable than that.”
The family is constantly on the road taking Tilly to appointments, so activities organised by Charlie House gives them all an opportunity to take some time out.
They have been able to enjoy relaxed soft play sessions and a trip to P&J Live to see Disney on Ice.
Miss Baird added: “They’d thought about everything to take the stress away. Disney was one of the best experiences we’ve had, we were all super happy.”
“I’d be quite lost without Charlie House now, not just the activities, but the support they all provide. Even just a chat when I’m having a difficult week.”
Community gives something back
Every year the community in Glass organise a 10-mile sponsored walk and choose a charity to receive half of the funds raised.
At the end of last year, the committee got in touch with Miss Baird and said they would like to donate to a cause which supports Tilly.
Glass residents rallied round to raise more than £1,300 for Charlie House and the Glass Community Association.
“Without a second thought I put forward Charlie House,” she said. “The support is invaluable and the community was more than happy to donate to them.
“There was such a high value of donations that came to ultimately support a young girl in their own community. It was heartwarming, and it’s a tough time for everyone right now so it feels like people are really rooting for us.”
The family has also set up a JustGiving page to raise money for Just4Children to ensure they provide everything Tilly need.
Conversation