Lilly’s story

Six-year-old Lilly is a happy, smiling girl who loves books, Disney characters and musicals; however, she was born with an unknown condition which throughout her early years has caused her many health problems.

Lilly was very poorly when she was born in 2006 and it wasn’t until she was two-years-old that she was finally diagnosed with Koolen-De Vries syndrome which is a very rare chromosome condition that means for Lilly, the future is uncertain.

Lilly’s Mum, Vikky says: “Koolen Syndrome affects Lilly in many different ways; she has severe learning difficulties and global delay, severe epilepsy, worsening visual impairment and deteriorating mobility issues which at times cause her to be wheelchair bound.

“She is also autistic and has a low immune system and respiratory problems; however, despite all this she really is the happiest, funniest and bravest little girl who makes us so proud every day.

“Lilly doesn’t sleep often and never has; she is always on the go even Lillyon days when her mobility isn’t very good, she is never, ever still. Due to her worsening visual impairment alongside her other issues she can’t be left for a second. She needs constant supervision so she doesn’t hurt herself, so looking after her is a 24/7 job and is very, very exhausting and draining, especially on the weeks that she has lots of hospital appointments, and even more so when the news isn’t as good as we’d like.”

Lilly lives with her mum, dad and big brother Ryan who is nearly 15. Vikky continues: “We come to Bluebell as a family, sometimes for quality time as that is rare in our lives. It gives us the chance to get a full nights sleep as her endless medication and continuous therapy is taken over by the care team and we know no matter what the future holds for Lilly they will always be there for us.

“On other occasions Lilly will stay in Bluebell alone so we can take Ryan out. Ryan has missed out on so much due to Lilly’s needs so while Lilly is at Bluebell Wood we can do something like take Ryan to the cinema. At these times we have complete trust in the staff as they care for Lilly as if she was their own, so we know she’s really happy there.

“There have been times when her health has not been so good and we’ve really appreciated her being able to go to Bluebell to recover in such lovely surroundings. The hospice has been a lifeline to us; we’ve also made some great friends and had lots of emotional support from them which is much needed to people like us who’ve had little or no family support.

Lilly 1D“Lilly just loves going and gets really excited when I tell her we’re going there, she loves the art and craft room, the music room and the Jacuzzi, she even tells everyone how yummy the food is there too!

“The hospice has also been great to Ryan by providing him with emotional support, days out and activities with the monthly sibling group. He enjoys going and has made some friends there too.

“There is even a parent group for us and I’ve always found this to be really supportive and helpful to us. We couldn’t cope without the hospice’s help in our life with advice, support and help when Lilly’s sick, thank you so much for all you do Bluebell Wood!”