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Meet Alexander

Alexander was diagnosed with a life-limiting neurological disorder caused by an extremely rare mutation of the WWOX gene in July 2022, when he was only four months old.

There is no cure. Family Support Worker Jaimie started supporting the family in December 2022.

Very sadly, Alexander died recently. When a child dies, as medical care is no longer needed, support for families from most health and care providers stops and families are left completely alone. This is not what happens with Rainbow Trust. Jaimie is supporting Alexander’s family through bereavement and will be there for them for as long as they need it.

Alexander’s mum, Emma, is a single mum and is completely heartbroken.

She is devastated.

No parent should face this, especially on their own. This is the most difficult thing a parent can face.

As Emma and her four-year-old daughter Bella grieve, Family Support Worker Jaimie is providing emotional support, helping Emma with her immense sadness, helping her process the enormity of her loss.

Jaimie is there to help them cope with their pain, help with funeral arrangements and anything they may need. Emma was determined to provide Alexander with the best quality of life possible and to create beautiful memories, making the most of her and Bella’s time with him.

Emma can’t drive so Jaimie took them to and from hospital appointments. She stayed with them, helping to look after Alexander and keep Bella entertained.

These activities and days out are now precious memories of Alexander for Emma and Bella. All of this has been incredibly hard for Emma. Making very difficult decisions and preparing for Alexander’s last days as a single parent was soul destroying.


Emma is devastated and Jaimie will continue supporting her and Bella as they grieve. Together we can make sure they don’t have to struggle alone. A Family Support Worker like Jaimie can help in numerous ways, tailoring their support to the specific needs of each family. This has a positive impact at the time of a family’s most traumatic situation.

If Alexander was hospitalised, Jaimie picked Bella up from school and took her to hospital. Jaimie then stayed with Alexander so Emma could go outside, have some respite and spend some mother-daughter time with Bella.

Finances for the family are tight so Jaimie also tried to provide opportunities for the whole family to make memories and to have some much-needed fun, such as by taking them to trampoline park accessible sessions and to farms which kindly provide free passes.

One of these visits was extra special as Bella was able to feed the baby animals and the farm named a baby goat born on that day after Alexander. Jaimie secured a weekend at the beach for Emma, Bella and Alexander to have a break and for Alexander to feel the sand and hear the waves.

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Together we can help families in urgent need of support, like Alexander’s.

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

Continued support for a family for as long as they need us

Continued support for a family for as long as they need us

Hearing your child has a life-threatening illness is the hardest thing any parent can experience - but they don’t have to go through it alone.

We provide bespoke continued support to families, helping to negotiate life after a diagnosis. We offer practical and emotional support to the whole family, through their darkest times.

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