Faced with an uncertain future after being diagnosed with a rare chromosome deletion disorder at six months old, Evie Mae and her family have since found love, care and support at Bluebell Wood. Mum Keeley shares their story and explains how she loves watching her little girl grow at their 'home from home'.

"All through my pregnancy everything was fine, but when Evie-Mae was born she became very sick and started to projectile vomit," said Keeley.

"She lost lots of weight very quickly and when she was four weeks old she started having seizures. At one point, Evie-Mae was having 60 seizures a day and she had to be put in an induced coma.”

It wasn’t until Evie-Mae was six months old that her parents found out she had Chromosome Group 2Q  Deletion, a very rare condition which means she is missing an important chromosome.

“We were really shocked when we found out about Evie-Mae’s condition. We just kept thinking ‘what is her future going to be like?’

The doctors couldn’t tell us a lot, which was really scary. At the time we didn’t know anyone else in the world with the condition. The only thing we were told was that she would have a shortened life expectancy.”

"Evie-Mae is registered blind and partially deaf and has to be fed straight into her veins because of a bowel and stomach condition; she also wears a ventilator at night to help her breathe. During her first twelve months Evie-Mae spent a lot of time in hospital, and when she was one year old her doctors referred her to Bluebell Wood.

“When we came to Bluebell Wood we didn’t know what to expect. The word ‘hospice’ makes you think it’s going to be a really scary place, but as soon as you walk into the building it feels like a home from home.

“Evie-Mae relies on me 100% for her care needs so visiting Bluebell Wood means we can have a break and relax as a family.

When she’s here, Evie-Mae loves playing in the sensory room and making arts and crafts with the Care Team.”

Evie-Mae’s brother, Brandon, also enjoys coming to Bluebell Wood, where he is a member of our sibling group. He has got to go on lots of fun activities, from sleeping over at Eureka! to doing a Firewalk.

Keeley and her family also find comfort in talking to the Care Team and other families who come to Bluebell Wood.

“Whenever people ask us about Bluebell Wood we tell them what a fantastic place it is for all of us. We’ve met so many lovely families who are on the same journey as us, and the staff here genuinely want to help; I don’t know where we’d be if it wasn’t for them.

"It’s been lovely watching Evie-Mae grow since she’s been at Bluebell Wood.”  

Make a difference to a child like Evie-Mae and her family by donating today