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Name: Oliver Baylis
Born: 2002
Lives: Horsham

From the moment Oliver was born, his mother instinctively knew that there was something seriously wrong with him. At eleven weeks old, he was diagnosed by his GP with a chest infection.

Despite antibiotics, his condition did not improve and he remained seriously ill for the next four weeks with vomiting, diarrhoea and lethargy. Upon admittance to his local hospital, Oliver’s body began to shut down and he was transferred to Great Ormond Street Hospital.

Here, Oliver was diagnosed with Congenital Neutropenia, a condition which affects the body’s immune system which meant that he was very susceptible to infection and illness. This condition is life threatening and means that Oliver’s parents having to administer daily injections.

Oliver is now three and half and has an older brother Jay, 7. Oliver’s mum, Sharon was referred to Rainbow by the community health team. She needed someone to come in and spend quality time not only with Oliver but also Jay.

Oliver’s condition is rare and unpredictable. He can go many weeks without any illness and then pick up one infection after another in quick succession. Consequently, Ben involvement as their family support worker is ongoing and what is required from him can change depending on the family’s current challenges.

Name: Kaia Hancock
Born: 30th September 1995
Lives: In Brighton with her parents

Kaia was initially diagnosed with Leukaemia in 1998 and was given a two year course of chemotherapy at Royal Mardsen Hospital.

During Kaia’s treatment, her doctors believe that she suffered a stroke and this resulted in a weakness in her left side and caused mobility problems. However, the first course of chemo appeared to be successful and Kaia was in remission her three years. Unfortunately, Kaia began to have nose bleeds and pains in her arm and was taken to hospital where it was confirmed that she had relapsed. It was decided that Kaia’s best and only option was to have a bone marrow transplant.

Kaia’s family had been recipients of Rainbow Trust’s support during her first bout of cancer as they’ve used Rainbow House for respite during her initial illness. This time round, they wanted a family support worker to provide additional support like transport as neither mum nor partner Darren can drive. Mum also wanted Kaia’s brother, Oliver to receive extra support as she was concerned that he may be feeling left out and isolated due to her frequent hospital appointments.

In September 2006, Kaia’s underwent a Bone Marrow transplant at Royal Marsden which has so far been very successful.

Name: Ben Marchant
Occupation: Trust carer

Ben is their family support worker and has provided ongoing support to the whole family. He has got to know all members extremely well. He drives the family to hospital for Kaia’s appointments, meets Oliver from school and spends time with him. He has also been with the family during their hospital visits/stays as well.