Donate now image

Donate now

Donation payment types
Donation payment values.

£5 could provide bereavement support to help a family cope with the death of a child.

James' Story

Your donations are urgently needed to help us provide support for more families with a seriously ill child.

Danielle and Chris are parents to five-year-old James, and 11-year-old Bella. At 28 weeks pregnant, Danielle was told she had pre-eclampsia and was admitted as an inpatient to get as close to 40 weeks’ gestation as possible. However, at 28 weeks’ gestation, James’ heart rate was dropping to dangerous levels, so surgeons needed to deliver James 12 weeks prematurely. Danielle explained how she initially felt calm during James’ birth, but when he was delivered, it quickly became clear something wasn’t right.

‘I heard him cry when he was delivered, and they had told me that he wouldn’t do that. When he was born, the whole room gasped. And I thought, that’s not good. I immediately felt sick.'

James was born with sepsis and a number of serious and complex needs due to a brain haemorrhage that caused a significant brain injury. James has cerebral palsy, he is fed through a tube in his stomach, he has hydrocephalus, is severely visually impaired and is non-verbal.

After giving birth, Danielle did not get to see her new baby for a number of hours and was soon told they would be transferring him to John Radcliffe Hospital in Oxford for special treatment. Danielle and Chris were then allowed to visit James while he was in an incubator. She describes how traumatic and difficult seeing her son in that way was:

‘When I saw James in the incubator, I cried for hours. I saw wires and machines hooked up to James’ little body and he was kept on life support. I didn’t recognise my baby. I remember thinking ‘what am I going to do? This isn’t what my son’s birth, that I had planned, was supposed to be like.’

Danielle, James' mum

In the next few months, James underwent eight blood transfusions, multiple brain surgeries, he had sepsis, kidney issues, sometimes high and sometimes low heart beat. When James was finally discharged from hospital, Danielle was diagnosed with post-traumatic stress disorder (PTSD).

With James’ many hospital appointments and the severity of his conditions making his health change quite drastically and suddenly, it was impossible for Danielle to commit to a regular therapy session. Danielle was told that after the third time of having to cancel a session, she would be removed off the list.

Danielle and her family were referred to Rainbow Trust Children’s Charity through their community nurse. Although she didn’t know what to expect, it wasn’t long before their Family Support Worker became the key support the family needed.

Their Family Support Worker met James when he was eight months old. Her support was originally mainly for James and his now 11-year-old sister Bella, who found it hard with James being in and out of hospital.

Their Family Support Worker would help them to have fun despite the day-to-day difficulties they faced. These play sessions also provided an opportunity to give emotional support to both children. For Bella monthly one-to-one sessions gave her focused “me” time. These sessions boosted both children’s confidence and social skills.

‘Our Family Support Worker was a blessing to us. If it wasn’t for Rainbow Trust, I don’t think we would be where we are now. It just blew our minds how kind someone was to us and interested in our lives and what we needed.'

“Having Rainbow Trust in our lives was truly a gift. Nothing was too much. We were able to see other families in similar situations to us. Our Family Support Worker was able to help us with clothing for James and to help find funding for equipment we never knew was available. She also provided transport for very important appointments and, even more important, surgeries. Nothing was too much. We could just relax – she was ‘our Nanny McPhee'." 

Danielle, James' mum

Rainbow Trust Children's Charity are there for a family from diagnosis, treatment, through to bereavement if necessary. Donate to Rainbow Trust Children’s Charity today to help us support more families like Danielle’s.

Donate now