Lauren (Lolly) Heal had just turned two when doctors discovered that she had dilated cardiomyopathy, an enlarged heart caused by a common cold, a condition which effects only one in six million children. However, during an operation, Lolly's heart stopped and beat for 20 minutes. Lolly suffered an hypoxic brain injury due to having been starved of oxygen for so long and her parents Sarah and Tristan were not given much hope.
A lot of Lolly's brain died when she suffered the hypoxic brain injury and she lost her ability to move her muscles, communicate and became cortically blind. Her heart also deteriorated and, Lolly's parents were told that her only chance of survival was to have a heart transplant.
“Even with occupational, play and physiotherapists playing with her, we were told that Lolly wouldn't make much more of an improvement and would spend the rest of her life, however long that will be, in a wheelchair and reliant on carers.'
Meeting Rainbow Trust
The family first heard about Rainbow Trust just before Lolly returned home for the first time in 16 months. Family Support Workers Jayne and Sara began to support the family with life at home.
'Jayne was there to listen to my worries and fears, to reassure me when I couldn't see how to deal with things. I was so anxious about Lolly and it was such hard work dealing with her physical needs and my emotions.'
Sarah and Lolly look forward to Jayne's visits. 'Lolly knows exactly who is coming round to play and the smiles on her face tell me she looks forward to it as much as I do! They offer us all types of support but the most valuable to me is providing me with a little respite time and giving Lolly quality fun time. They take Lolly swimming, to the park or do ‘normal’ toddler activities at home I know I can rely on their support..'
Horse riding lessons
Rainbow was able to get vouchers for lessons at a local horse riding centre and Sarah and Lolly jumped at the chance. 'Lolly loved the day and lay on the horse with a huge smile on her face. That evening, while I was supporting Lolly's trunk, to my amazement she stepped forward! A physiotherapist couldn't get the same number of muscles moving in a 24 hour period so I know that her muscles must have been stimulated from horse riding. It was incredibly overwhelming to see her step, I just wish I'd had a video camera on me to show Jayne and Sara!'
Although the family are trying to raise enough money for stem cell research to improve Lolly's brain function, the Heal family aren't sure how long they have with her due to her life-limiting heart condition. Lolly's brain condition needs to improve before she can been considered for a heart transplant. 'We try to enjoy all the time we have with Lolly and the support from Jayne and Sara definitely helps. I can leave Lolly with them in absolute confidence that she is being well cared for and having a great time. I know I can call on Rainbow when I need help and that is a great comfort to my husband and I.'
