Linda was thrilled when her daughter was born – and couldn’t wait to introduce beautiful blue-eyed Evie to her two brothers and sister. For eight weeks the little family fussed proudly over Evie and everything was perfect.

Then one night Evie began to have severe fits and was rushed to hospital. After weeks of tests she was diagnosed with West Syndrome, a rare form of epilepsy.

Doctors told Evie’s family that the condition was so rare they might work for 100 years and never see a case. They added that it was life-threatening – it was hard to say how long Evie might live for but she was unlikely to reach the age of ten. The family should prepare for the worst.

Linda and her husband Dave’s world fell apart. They didn’t know where to turn with three young children and a desperately ill baby.

“We were told we had to prepare an end of life plan for Evie. I just looked at her lying there and I cried my eyes out,” recalls Linda.

“I had so many hopes and dreams for my baby. When someone tells you that they are going to die it feels like your world is ending.”

Linda contacted Tŷ Gobaith for help. Thankfully our experienced nurses and counsellors were immediately able to provide specialist support. The family was no longer alone. 

Love and expertise

“That was the best thing that ever happened to us,” says Linda. “We were really nervous and scared but from the minute we walked through the door the nurses welcomed us all with love and expertise.

“They had the skills to cope with Evie’s complex condition and were brilliant at looking after the rest of us too. Suddenly things seemed more bearable.”

Regular respite stays have proved a lifeline for the family, giving Linda help to care for Evie and also support to Caitlin, Harrison and Nathan to help them live with their sister’s illness.

Over the past decade Evie’s health has fluctuated and there have been desperate times, but Tŷ Gobaith has always been there to provide practical and emotional support. When she turned ten in May Linda threw her the best birthday party ever.

One day at a time

“Time and time again I have been told by doctors that Evie can’t do things or won’t survive but, with the help of Tŷ Gobaith, we just take one day at a time and make the most of things,” says Linda.

“She is always so happy when she comes here. She loves being in the middle of everything and having lots of people around. She loves the noise and mess of the playroom and she loves dressing up in pretty clothes.

“I’m just living for the day when Evie is able to laugh. She has a beautiful smile and her eyes are bright so I know she is enjoying herself here, but the sound I want to hear most in all the world is a great big chuckle from my little girl.

“I don’t know what the future will hold for Evie but for the time we have her we just want to make her as happy as we can. Tŷ Gobaith gives us the help, time and space to be together and have fun together. I can’t thank them enough for being here.”

Sadly Evie died on March 30th, 2020. We will continue to be here to help and support her family through their bereavement.

Your support means we can help more children like Evie, and their families too.

If you would like to make a donation in memory of Evie please go to:

Thank you!