Lara’s story

Lara has been visiting Bluebell Wood Children’s Hospice since she was born and often stays for respite. Her infectious smile can light up a room.

When Lara was born in 2008, she was taken to the special baby care unit because of her erratic breathing pattern. During the next month or so, Lara was diagnosed with Jouberts Syndrome, a rare genetic brain condition.

This means that Lara finds many things difficult: her breathing is erratic, she has apnoea attacks, muscle control is difficult, her retina has not formed properly and she can’t swallow.

Lara is a very determined and bubbly young girl and is now beginning to use a specialist computer programme to communicate. She is also learning to move around with the help of a walking frame.

Her dad, Jeremy, explains: “She is making unbelievable process. Lara has the cheekiest grin you have ever seen. In fact, we can’t get more than twenty yards down the road without somebody stopping to say hello to her.”

During each year, Lara stays for respite at Bluebell Wood several times, where she loves seeing the familiar faces of the Care Team and taking part in many play activities.

“Bluebell Wood has and continues to be with us every step of the way. In truth, without the caring, loving support of Bluebell Wood I doubt we could have made it this far,” said Jeremy.

“The hospice has been fantastic and helped us in so many ways. After Lara was born we found it very difficult to cope for a long time (and still do at times). Respite care is a real life line, it gives us some time to rest, and also to spend a bit of time with our other daughter.”

At one point, when Jeremy was having a really difficult time and was in danger of becoming quite ill, Bluebell Wood stepped in to organise day care for Lara.

Jeremy said: “The other families are also fantastic, their experience, knowledge and advice are a great source of support. The parent and grandparent group gives us a loving and supportive environment in which to relax and take a bit of time for ourselves.

“The entire staff team at Bluebell Wood is brilliant; everything revolves around Lara and the rest of the family’s needs. The support and care is invaluable to us, their empathy and professionalism are unrivalled.

“Lara loves Bluebell Wood, she gives us the most heart-warming smile whenever we tell her we are going. It is such a warm and fun place to be.”

If you would like to help other families just like Lara’s click here to make a donation.