Rainbow Trust supports families like the Khans.  Daughter Anisah was diagnosed with bone cancer when she was nine years old.  Rainbow Trust Family Support Worker Linda has supported Anisah's brother Ismael and four sisters Sameena, Maryam, Humayra and Zahra through Anisah's chemotherapy treatment and life changing operation to remove the tumour from her leg.

Her parents Zafar and Sarfraz explain the difference Rainbow Trust makes to their large family.

"The cancer wasn't just Anisah's illness, it affected the whole family.  Every one of us has changed as a result of the experience.  Rainbow helped us go through this ordeal as a family, together and stay as strong as possible.

"All of Anisah's siblings help with her care.  They go to hospital appointments with her and help support her around the house.  Her older sisters have been especially busy with her care over the holidays, putting her to bed during the day if she feels tired and making sure she is never alone in case she faints or falls.  We know it impacts on their social lives but we need their help to look after Anisah.

"Anisah's sister Maryam has just finished her A-levels, but she hasn't done as well as we thought she would.  Maryam used to love college and she was predicted really high results and wanted to be a pharmacist.  The stress and emotion of Anisah's illness meant that she didn't want to go to classes and struggled to concentrate on college work.  She's so close to Anisah, and struggled to deal with what was happening to her and what could happen in the future.  She'd sit in the library day after day, not knowing what to do.  She needed our help and support and because we were away at the hospital with Anisah, we just weren't there for her.

"Linda provides the best kind of support for Maryam and Anisah's brother and sisters, she laughs with them and takes their minds off what is going on for a couple of hours.  She listens to any concerns they have.  Linda is just trustworthy.  We're always wary of talking to outsiders about Anisah and what we're going through but both of us and the children feel very comfortable talking to Linda."

Links:

• Our website

Rainbow Trust's hospital support has been invaluable to Joysie Piedade's mother Ana.  Joysie was starved of oxygen at birth and faced a prolonged stay in hospital.

From the moment Family Support Worker Alison met the young family, she made a difference.  Without a car, Ana was relying on public transport to get to and from hospital.  Alison started taking the family to hospital appointments so that the time Ana spent travelling was significantly reduced and far less stressful.  She also helped by taking Ana's son Zion to school.

"I couldn't spent time with Zio as I couldn't leave Joysie alone in hospital; it was so difficult doing everything alone.  I had such a feeling of relief when I met Alison and she asked me what she could do to help.  She's wonderful to have at hospital appointments, someone else to listen to what the doctor is saying and to be another pair of eyes and hands for my two children.  Also there's someone to listen to my concerns; it can be very lonely and terrifying being a single mum."

Joysie's pushchiar didn't fit in the back of a taxi and was too heavy for Ana to take on a bus.  Alison's Rainbow Trust Kangoo was the only vehicle she could use with ease which also had space for all Joysie's breathing apparatus and suction tubes.

"When Joysie started having fits and went in and out of comas over Christmas, Alison was there for us.  She came to visit us in the hospital and brought Zion with her, also taking him to school.  It was an awful time and I tried to be strong and hope for the best but I wouldn't have been able to cope if it hadn't been for Alison's support."

There is no definite long term prognosis for Joysie and Ana is continuing to cope with the uncertainty.

Links:

• Our website

Last year, Rainbow Trust supported 140 single parent families.

In most cases, when a child becomes ill, a network of family members and friends become a support team for worried, exhausted parents and siblings.  Parents, especially single parents without this support network often face increase financial strain, uncertainty about the future, social isolation and fatigure.

Rainbow Trust is committed to supporting families who may not have access to other networks of support.  Looking after a child with a life threatening or terminal illness can be a very isolating and lonely experience.  Rainbow Trust understands that needing someone to talk to doesn't always happen during "working hours".  A Rainbow Trust Family Support Worker is available to provide emotional and practical support 24 hours a day.

Links:

• Find out more about our work

Two year old Malachi Tyler was diagnosed at birth with Neurofibromatosis, a genetic condition which varies from one person to another even in the same family. Some people will be mildly affected with very few health problems while others will have some serious health problems making their daily life difficult. 

When Malachi was just one, his parents first noticed that he was walking around furniture and he was diagnosed with muscle hypertonia and a MRI Scan was arranged at St Thomas Hospital in London. 

Four out of six of Malachi’s siblings have NF of varying degrees so mum Emma wasn’t unduly worried when they were told that he had the same genetic condition. About two weeks after the scan, Emma received a call from the hospital to say that they would like to see them the following day. “I was very scared when doctor wanted us to go the following day. It was too much for me to bear and I wanted to know more there and then; there was no way that I could wait until the following day.” The doctor said that scan results showed Malachi had an optic glioma; a tumour that grows in various parts of the brain. The family went to the hospital the next morning and were told that their son had no sight in his left eye and limited sight in his right and that further deterioration should be expected. Malachi was immediately referred to St John’s Hospital in Chelmseford to receive his chemotherapy and that’s where the family first heard about Rainbow Trust.  Debbie one of the Essex care team workers was assigned to the family and since that time, the family has never looked back. 

At the end of last year, the worst happened. Emma noticed that Malachi was now walking into furniture and called the hospital for an urgent appointment. They confirmed what Emma knew, Malachi had gone completely blind, “Even though I knew that Malachi had lost his sight, it was a sad day when we got it confirmed by the doctors.” 

“Over the last year, we’ve had some pretty dark days and we were all thankful that Debbie was there to share them with us. When Debbie visits, she will spend time with Malachi’s other siblings and has built up such a good rapport them all. Also Graham and I are grateful for her for the support she gives to us. She will pick up and take the children to school and has taken Malachi to hospital when we’ve not had access to a car.  I know that I can call Debbie whenever I need her if I need someone to talk too. We really appreciate the care and support Rainbow Trust has given us, in fact, I don’t know how we would have survived without it!” 

Debbie said: I enjoy working with the Tyler family because they really do utilise me and I believe that I’m making a real difference to the family and that’s what it’s all about.”     

Links:

• http://www.rainbowtrust.org.uk

Our volunteers are extremely important to Rainbow Trust working across the organization to help with fundraising in particular.  So it is vital that we are able to supply our volunteers with up to date materials to use at our events - from marquees to pop up posters, from character costumes (which always bring the children in) to balloons and t-shirts - donation towards these costs helps raise awareness of Rainbow Trust at the many events we attend.

Andrew Goodwin was introduced to Rainbow Trust just before Christmas 2007 and has been an enthusiastic volunteer ever since.

"I was told by a friend that some help was needed with wrapping Christmas presents in exchange for donations in the shopping centre in Guildford and I thought I would give it a go," says Andres, who works as a report writer to the Independent Financial Advisers in London while also working towards his qualifications as a chartered financial planner.

"It raised some money, but more importantly, was a good way of spreading the name of Rainbow.  I immediately offered to help again at future events."

Since then Andrew has worked on the Rainbow Stall at Ashtead Village Day and Box Hill Village Fair, handed song sheets and collected donations during carol singing in Trafalgar Square, and manned the entrance point to a host of fundraising events at bike rides, the London Hilton on Park Lane, Ascot Park Polo Club and Goldsmiths' Hall.

"I'm known as the Rainbow doorman as I'm often the first person people see when they arrive at an event."  Andrew has a lot of fun helping at events and has enjoyed visiting places he might otherwise never have gone to.

"Volunteering for Rainbow is very easy.  It is great to work with such a good group of people and it fits very well with my job in London and exams.  I can help out at events after work and when I'm free at weekends.  After spending all day working on behalf of wealthy clients, Rainbow Trust provides me with a very good balance in my life." - Andrew