Children's Hospices Stories

Six year old Sophie Byrne is a real fighter. She suffers from Tuberous Sclerosis Complex. This is a genetic condition caused by a fault in a gene. People with this condition have growths, sometimes called tubers or lesions, in different organs of the body. It can affect the brain, heart, eyes, skin, kidneys and lungs. They may have epilepsy, learning disabilities, autism spectrum disorder and kidney problems. Symptoms vary from one person to another, with some people showing very few symptoms and other being more severely affected.

Sophie was born with her condition and when she was only a few days old tests revealed "very, very abnormal brain activity". A brain scan revealed a growth a third of the size of her brain and by the time she was diagnosed with tuberous sclerosis she was experiencing 100 or more epileptic seizures per day. From the age of 6 weeks Sophie underwent different drug therapies, which all failed. At 18 months she had a life-saving operation to remove half of her brain. She spent the next three months in intensive care fighting for her life. She now has a Vagus Nerve Stimulator (VNS) surgically inserted to try to control her seizures.

Every three or four weeks Sophie has a period of severe fits. This leads to her spending time in Intensive Care, after which she now can recuperate at Rainbows Children's Hospice in its emergency bed, otherwise known as the Symptom Control Bed. One bed is always kept free at Rainbows allowing any child in desperate need of respite care to stay at a moment's notice - taking the strain off families at home and giving children like Sophie the expert care they need in a familiar environment.

The emergency care system that Sophie's family uses is just one service that Rainbows offers to families with children with life-limiting and life-threatening conditions. For Sophie's family it has been a harrowing journey but Jane said that she has learned a lot along the way, thanks to Rainbows. Sophie's mum says: "Even though you just want to be there 24 hours a day, the biggest thing I have learned is actually you need a break. Once we realised Sophie was going to be able to come home from the hospital and we were going to be able to live a life with Sophie, we were referred to Rainbows for respite care. It was more than respite - it was total support with the nurses carrying out the bits of care we delegated to them. Now it is more like Sophie's little health spa. She comes away from there so well and relaxed. She has a massage, her nails painted, a Jacuzzi, to name just a few of the many benefits. Sophie loves the multi-sensory room which is something you do not have anywhere else. You tend to think that no one else could look after your child as well as yourself but actually Rainbows does. It has been a gradual process but I now feel able to leave Sophie overnight whilst the rest of the family has some quality time together. If Sophie needs a longer stay then I stay at the children's hospice too. It offers support - it has been great to meet other parents who are in a similar situation. That is a lot of comfort."

A host of activities are offered at Rainbows Children's Hospice which provides vital respite and palliative care for youngsters with life-limiting illnesses. But one of the favourites is the multi-sensory room. Children are encouraged to respond to light, music, touch and smell. Themed days are also used giving the children a taste for the seaside for example. The soft play room which is filled with balls and other equipment gives children the chance to be boisterous and let off steam without coming to any harm. There is also music therapy which helps those children who have difficulty expressing themselves to communicate their emotions and young people can record songs for friends and family to keep for years to come. When a child comes to stay at Rainbows their bedroom is personalised with their favourite colours, bedcovers etc to make it feel like a real home away from home.

There is a bereavement suite where a bereaved family can be together away from the outside world. Rainbows Children's Hospice also works with families for as long as is needed, offering support and help as part of its bereavement support service.

When Alicia Collins was born five years ago, doctors told her mum Cindy and dad Craig that she would not be able to move her arms and would be very brain damaged, but she would be able to smile. Happily, Alicia has proved them wrong and continues to surprise her parents with what she can manage to do every day.

Alicia has severe Dystonic Cerebral Palsy, affecting all four of her limbs and her oral movements. During her birth she became distressed in the womb, was delivered by emergency caesarean section and was stillborn. It took 22 minutes to resuscitate her during which time her brain was starved of oxygen and she was not expected to survive the night. This difficult entry into the world left her brain damaged and lead to the doctors' gloomy prognosis.

However, Alicia is a very happy child. The doctors were right about one thing ' Alicia can smile; as Cindy explains: 'I love seeing Alicia wake in the morning as she just smiles from the moment she wakes until she goes to bed.' She is also able to move her arms and legs in water and this, not surprisingly, is her favourite activity.

Alicia is a regular visitor to Julia's House, the only children's hospice in Dorset, based in Corfe Mullen. There she enjoys the attention of the Carers, a good sing-song and getting messy creating works of art. She also has visits at home twice a week from Julia's House Carer, Barbara. Barbara has been taking Cindy and Alicia through a physiotherapy programme that has been adapted for Alicia's specific needs and development. Once a month, Alicia, Cindy and Alicia's brother, 3-year-old Coby, attend the Julia's House toddler group, 'We love the group,' says Cindy, 'Coby enjoys playing with the toys, Alicia enjoys watching him and I enjoy talking to the carers ' a great morning for us.'

Alicia's needs are complex: she has to be given medication four times a day, she cannot take anything orally and is fed through a tube into her stomach; she is prone to vomiting and she also suffers from epileptic seizures. She can't tolerate loud noises as she startles and gets so upset that she vomits and can take up to half an hour to calm down.

Cindy explains what the support and respite of Julia's House means to her: 'Julia's House is a huge help and support to us as Alicia is very demanding and sometimes Coby can suffer because of this. When Alicia is at the hospice, it gives Coby and me time together to go swimming or to our local toddler group. Alicia is always so happy when I sign to her that she is going to the house and when she is there we can relax knowing that she is in safe hands. It is hard to leave your child with others even when they are healthy and it is even more difficult with a child with complex needs. No words can really explain how much Julia's House helps us'.

More about Julia's House

- Julia's House is Dorset's hospice dedicated to children with life-limiting conditions. The majority of the children that it cares for are unlikely to live into adulthood (defined as beyond the age of 18). The children's hospice complements the work of the Julia's House Community Team, which consists of 65 nurses and carers who travel the county, providing life-changing support for families in their own homes. In 2007, the charity provided more than 7,500 hours of care for Dorset's children.

- It costs around $1.9m to run Julia's House, yet the charity receives just three per cent of its total annual funding from the government. The rest of the charity's essential income is raised through the generosity of the Dorset community, corporate partners and charitable foundations. For more information about Julia's House, please contact 01202 607 400 or visit