Life has been far from easy for Summer-Mae, but the girl with the “most beautiful smile” lights up the room wherever she goes. Mum Emma tells of the joy she brings their family, and the utter devastation when they came so close to losing her one Christmas.

“Summer-Mae is such a happy and bubbly girl and loves being close to the people she knows,” said Emma. 

“She’s been through so much already in her life but she’s such a fighter and is just a pleasure to be around.”

The inspirational youngster’s first battle came before she was even born, when Emma caught Parvovirus 24 weeks into her pregnancy.

“I had weekly scans after the diagnosis and everything seemed absolutely fine. She was healthy and developing as normal which was a huge relief,” she said.

A routine scan at 39 weeks showed her movement had decreased, leading to an emergency C-section.

“When she arrived she seemed perfectly healthy and everyone was happy - but within a couple of days things started to go downhill.”

Summer-Mae failed her initial hearing test and missed various other developmental milestones, but it was another two years before the severity of her condition became clear.

“She was very crabby one night so I brought her into bed with me. I woke up and she was having a seizure. I’d never seen one before so it was really scary. She was diagnosed with epilepsy which they thought was as a result of the Parvovirus and explained many of her developmental issues.”

Summer-Mae was eventually diagnosed with cerebral palsy, uncontrolled epilepsy, global developmental delay and uses a wheelchair to get around.

In winter 2019, the family’s worst nightmare came devastatingly close to reality. After her condition deteriorated, Summer-Mae spent much of December in hospital as she awaited an operation.

“She was basically given an hour to live. A surgeon came in to say she could die on the operating table so we had to get family there in the middle of the night to say goodbye.

“Christmas Day was so hard. Her brothers and sisters were allowed to visit but they had to come in one by one. It was an emotional roller coaster and utterly terrifying. We came so close to losing her and I just couldn’t comprehend that.”

Thankfully the operation was a success and Summer-Mae eventually turned a corner, and three months later was able to return home to her family.

The family’s support networks are now more important than ever in these uncertain times, and they’ve found a new ‘home away from home’ at Bluebell Wood.

“I was really anxious at first as I didn’t know what to expect – but when I had a look around the hospice I was amazed at how nice it is.

“The staff were all lovely and they took Summer-Mae away and did activities, played and even settled her for the night.

“They did all her care too – we were so impressed. The only time you can leave her side is when she’s asleep so it felt like they lifted everything from me and it was such a weight off.

“We also managed to attend Bluebell Wood’s Christmas party before Summer-Mae had her operation and it was just amazing. Seeing all the children and their families having such a wonderful time was so lovely.

“To me Summer-Mae is a normal girl and that’s exactly how she is treated at Bluebell Wood – it really is an amazing place!”