Smiling woman in rainbow shirt and sunglasses, arms outstretched, leading a group in a race.

Upcoming events

Find out how you can get involved today!

A bald child with medical tubes is embraced by an adult in a hospital setting.

Meet Ellis

Find out why your support matters.

Selfie of a smiling man and woman indoors, with an outdoor garden view through a window.

Leaving a legacy

Find out more about leaving a gift in your Will.

Dear Supporter

A message to our Supporters from Zilla B.

A smiling woman in a red jacket with a Rainbow Trust Children's Charity logo in the background.

Highlights

Scroll Down

Rainbow Trust colorful logo and tagline "Supporting Families With A Seriously Ill Child".

Back

Welcome to your Autumn/Winter edition of Families First.

Every day, families caring for a seriously ill child urgently need support as they juggle relentless hospital appointments, fear for their child’s future and the emotional and practical toll this takes. At Rainbow Trust, we believe that no family should face this alone. 

With your support, in the past year our Family Support Workers provided support to 1,532 seriously ill children and their families, a 20% increase from the year before, helping them when they need it most.

In this edition, you can read about the difference your support has made to Ellis’ family following his terrifying cancer diagnosis, and how Family Support Worker Abi is helping Emily’s family navigate an uncertain future and countless hospital appointments.

Thank you for your kindness.

Zillah Bingley, Chief Executive

Dear Supporter

A smiling woman in a red jacket with a Rainbow Trust Children's Charity logo in the background.
Two large blue quotation marks.
Two large blue quotation marks.

We were told she had a very rare neurological condition called de-novo-heterozygote variant gene SCN8A. There is no cure.  

Hearing that broke us. We were very scared. We didn’t know what to expect for our daughter, for her future. 

Now Emily is eight. She still has seizures every week and my husband Bujar and I have to be with her all the time to give her medicine and monitor her. It has been a very hard few years.  

In September 2023, Family Support Worker Abi began supporting. 

I have only just passed my driving test, and I am scared to drive alone with Emily because of her seizures. Abi picks us up and drives us to hospital appointments, which takes away that stress of driving with Emily alone, traffic jams and finding parking. We would have really struggled without this support. 

Before Abi, Bujar had to take time off work to drive us to hospital and he would lose a day's wages. We were really struggling financially. Abi’s support has helped ease that burden.  

Abi also stays with us in hospital. She plays with Emily so I have the time and energy to focus on the appointment and to talk to the doctors. This might sound small, but on those days it means everything. 

Abi has helped with so many things, like applying for a special car seat for Emily. I didn’t have the time or energy to do this on my own.  

When Emily’s condition gets too much, having Abi to talk to makes a big difference. It has helped me to feel less alone. 

We don’t know what the future holds for Emily. That is scary. But I do know that without Abi and Rainbow Trust we would still be like we were three years ago, struggling.  

When Emily had her first seizure, our lives changed forever.

"Abi and
Rainbow Trust
have changed
our lives."

Woman embraces smiling child in a wheelchair outside a building entrance.

Will you sponsor a Family Support Worker like Abi today?

Many more parents like Remila and Bujar are struggling with the impact of their child’s life-threatening illness. They face emotional distress, relentless practical challenges, and often financial hardship, with little relief. These families need support today.

By sponsoring a Family Support Worker like Abi, you will help Rainbow Trust provide vital support to families at the moment they need it most.

Emily had her first seizure when she was six months old.

Smiling young girl in a striped top against a wall of pink and white flowers and green foliage.

How your support helps

How your support helps

How your support helps

A smiling child proudly presents their colorful paper craft diorama with buildings and animals.

During an online support session with Family Support Worker Anna, Nithin, aged nine, wanted to create a pop-up card. Nithin’s sister is three and has a complex heart defect.

Smiling blonde boy in a toy digger.

Oscar, aged three, attended a Family Fun Day organised by the Southampton Care team at Paulton’s Park. His nine year-old sister Alice was diagnosed with neuroblastoma.

Toddler in pink jacket and sunglasses holds dandelion and flower bucket on a path.

Evie, four, has a genetic condition that causes tumours to grow on her nerves. She enjoyed a walk with Family Support Worker Cindy, searching for plants to make a gift for her parents.

How your support helps

Toddler in orange dress playing magnetic fishing game on carpet, catching toy sea creatures.

While her mum attended a session about talking to your child about their diagnosis, Cora, two, played with Family Support Worker Laura. Cora has recently been given the all clear after receiving treatment for neuroblastoma.

A woman takes a selfie with two babies in a double stroller in a sunny park. One baby wears sunglasses.

Family Support Worker Gina took two-year-old twins Ellis, who has a rare condition, and Ava out for a sunny walk and picnic in Manchester, allowing mum to attend an important meeting.

Smiling child in cream tracksuit plays on a yellow playground structure under a blue sky.
Smiling woman and happy child in a selfie, woman wearing a Rainbow Trust shirt.

After supporting Lara, seven, for 13 months while she awaited a heart transplant, Family Support Manager Jen had her last in-person visit with the family. Jen regularly provided respite by doing play sessions on the ward with Lara and taking her brother Jude, aged two, out on trips.

Two pink quotation marks.

A day in the life of Family Support Worker Sarah

Sarah joined Rainbow Trust as a Family Support Worker in the Lancaster-based Care team.

In the morning, I picked up five-year-old Amelia and her granny, Lizzy, from their home. Amelia was diagnosed with a neurological disorder last September.  

Today I drove them to a hospital appointment in Lancaster. Appointments are already draining and stressful so not having to worry about parking and traffic was a weight off Lizzy’s shoulders. These appointments are also unsettling for Amelia so I brought along some sensory toys to keep her occupied. 

Afterwards I took them to a soft play where Amelia had the chance to have some fun. While she played, Lizzy and I took some time out to talk about the appointment. 

After dropping Amelia and Lizzy at home, I picked up two-year-old Rio, who has chronic lung disease, and his mum Jahmilla. Jahmilla cannot drive and, due to Rio’s oxygen tank, she struggles to get out.

Baby with nasal tube, toys on starry cushion in dark blue room with glowing stars.
Rio enjoying the sensory room
Smiling woman in burgundy Rainbow Trust polo shirt with logo: 'Supporting families with a seriously ill child'.

Sarah joined Rainbow Trust in January 2024

Today I took them to the multisensory Creative Space Centre in Preston. Rio was so excited, he especially loved the bubble tube. On the way home we stopped at a shop so that Jahmilla could pick up some essential food items. I entertained Rio giving her time to focus on shopping without the complexities of moving his oxygen tank.  

I ended my day with a visit to Ruby’s family after receiving a text from her mum, Nikki, who wanted some support. Ruby is four and has a rare condition that affects bone marrow and the pancreas. I brought along some holiday themed arts and crafts for Ruby and her sisters and provided some emotional support for Nikki. 

Every day is so different in this job due to the one-to one nature of the support we provide for families. It is very specific support that is tailored to them and their needs. It is very unique. 

 

With your help, more families can receive this vital support.

Two pink quotation marks.
Orange quotation marks on a green background.
Orange quotation marks on a green background.
Young child with decorated medical tubes and pacifier, embraced by an adult.

Jayne provided emotional support, listening to the family’s worries and concerns; respite, allowing Chloe and her husband Neil time to get some fresh air; and arts and crafts for Ellis, giving him a distraction from his treatment.  

For Chloe, Jayne’s support has been crucial as she struggled to come to terms and cope with Ellis’ diagnosis and his future. Jayne provides a safe space for Chloe, giving her the chance to offload. 

With the countless hospital appointments and treatments, Chloe has found trying to remain present for her six-year-old daughter Lily very hard. 

Jayne helps Chloe and Lily to have more one-to-one time by supporting with after school activities. Having Jayne’s support means that Chloe can spend meaningful time with Lily, without worrying about Ellis. 

Jayne provides reassurance and a sense of stability for the family at what continues to be an uncertain time. 

“When we had our babies, we never imagined we might not see them grow old” 

At the start of 2023, aged two, Ellis was admitted to hospital on several occasions with seizures. He was diagnosed with stage four neuroblastoma, a rare type of cancer, and was given a 44% chance of recovery.  

“He was terrified of everyone and everything, he became withdrawn. One minute he was playing with friends, the next he was being pinned down for cannulation and tubes down his throat.” 

Before Ellis was diagnosed, Chloe had her own business but due to Ellis’ condition she had to stop. This had a big financial impact on the family and took an emotional toll on Chloe.  

In March 2024, after being referred to Rainbow Trust, Family Support Worker Jayne started supporting the family at home and in hospital.  

neuroblastoma

Neuroblastoma is an aggressive and rare type of cancer that usually affects children under the age of five. Each year around 100 children are diagnosed with neuroblastoma in the UK. 

A bald child with medical tubes is embraced by an adult in a hospital setting.

I cannot describe the feeling of devastation, terror and shock. A feeling of pure heartbreak and desperation. I could hardly breathe. 

Get involved

With your help we can continue to make a meaningful and lasting difference to seriously ill children and their families.

There are many ways to get involved.

London Carol Concert

4 December 2025 Celebrate the magic of Christmas at our candlelit Carol Concert.

Brighton Marathon

12 April 2026 Take on one of the UK’s biggest and best marathons in the beautiful coastal city of Brighton.

Other Challenge Events

Dates throughout the year in a number of world-famous marathons and half marathon events.

Bath 50 Ultra Challenge

28 March 2026 – Walk, jog or run your way through beautiful countryside views.

London Landmarks Half Marathon

12 April 2026 Not your typical half marathon, it is a sightseeing adventure on the run!

Join team Rainbow Trust! Find out more and sign up:
London Carol Concert

4 December 2025
Celebrate the magic of Christmas at our candlelit Carol Concert.

A conductor leads a children's choir in white and blue robes performing in a grand, ornate church.

Brighton Marathon

12 April 2026
Take on one of the UK’s biggest and best marathons in the beautiful coastal city of Brighton.

Smiling woman in rainbow shirt with arms out, leading a crowd at an outdoor event.
Smiling runners at the start of a charity race, surrounded by event banners and a historic building.

Bath 50 Ultra Challenge

28 March 2026
Walk, jog or run a distance of your choice through stunning countryside with panoramic views.

Other Challenge Events

Dates throughout the year in a number of world-famous marathons and half marathon events.

Runners on a palm-lined road during golden hour, one man raises his arm triumphantly.
Houses of Parliament, Big Ben, Westminster Bridge over River Thames, London.

London Landmarks Half Marathon

12 April 2026
Not your typical half marathon, it is a sightseeing adventure on the run!

Join team Rainbow Trust! Find out more and sign up:

Events

Show your support and join us, or create your own event or challenge in your community or work.

Don't miss out
on winning
up to

£25,000

every week!

Terms and conditions apply. Rainbow Trust Children's Charity is licensed and regulated in Great Britain by Mole Valley District Council under account number 046790.

Celebrate with us

If you have a special occasion coming up, a wedding, anniversary, baby shower or birthday, make your celebration even more special by fundraising to support seriously ill children and their families.

A smiling child proudly presents their colorful paper craft diorama with buildings and animals.

During an online support session with Family Support Worker Anna, Nithin, aged nine, wanted to create a pop-up card. Nithin’s sister is three and has a complex heart defect.

Smiling blonde boy in a toy digger.

Oscar, aged three, attended a Family Fun Day organised by the Southampton Care team at Paulton’s Park. His nineyear- old sister Alice was diagnosed with neuroblastoma.

Toddler in pink jacket and sunglasses holds dandelion and flower bucket on a path.

Evie, four, has a genetic condition that causes tumours to grow on her nerves. She enjoyed a walk with Family Support Worker Cindy, searching for plants to make a gift for her parents.

10

Toddler in orange dress playing magnetic fishing game on carpet, catching toy sea creatures.

While her mum attended a session about talking to your child about their diagnosis, Cora, two, played with Family Support Worker Laura. Cora has recently been given the all clear after receiving treatment for neuroblastoma.

A woman takes a selfie with two babies in a double stroller in a sunny park. One baby wears sunglasses.

Family Support Worker Gina took two-year-old twins Ellis, who has a rare condition, and Ava out for a sunny walk and picnic in Manchester, allowing mum to attend an important meeting.

Smiling child in cream tracksuit plays on a yellow playground structure under a blue sky.
Smiling woman and happy child in a selfie, woman wearing a Rainbow Trust shirt.

After supporting Lara, seven, for 13 months while she awaited a heart transplant, Family Support Manager Jen had her last in-person visit with the family. Jen regularly provided respite by doing play sessions on the ward with Lara and taking her brother Jude, aged two, out on trips.

11

Text "octopuslegacy" in dark blue on a dark green background.
Orange quotation marks on a green background.

Hello I am 41 and I live with my five-year-old son Freddie and my partner Adam. When Freddie was born, he spent a week in hospital with breathing difficulties. 

It was terrifying. Finding out that your newborn is unwell and you can’t take it away from them is so scary and overwhelming.  

We are lucky that Freddie made a full recovery. But it made me realise how tough it is for families with seriously ill children, because some of them may never get that moment of “we are past that now”.

That is why Adam and I decided to leave a gift in our Wills to Rainbow Trust. 

Writing a Will may appear confusing but the process was very simple as Rainbow Trust has partnered with Octopus Legacy, a user-friendly and easy to understand Will writing service. 

If you need to write a Will, this is a win-win: a free service and it is going to support seriously ill children should you decide to include a gift to Rainbow Trust. 

It is nice knowing that something good is going to happen and I am going to leave a legacy. 

Selfie of a smiling man and woman indoors, with an outdoor garden view through a window.

Adam
and
Stacey

Orange quotation marks on a green background.

Free Will offer

Writing a Will gives you the confidence that your loved ones will be looked after as you protect your wishes for the future. With our partner, Octopus Legacy, you can write a simple Will online, over the phone or in person for FREE. Help is available if you have any questions and legal experts check over each Will. 

With our partner, Octopus Legacy, you can write a simple Will online, over the phone or in person for FREE. Help is available if you have any questions and legal experts check over each Will. If you would prefer to write your Will over the phone or face-to-face, then please call 020 4525 3605. 

My gift is a promise for the future

Stacey and her partner Adam are leaving a gift to Rainbow Trust in their Wills.

If you would prefer to write your Will over the phone or face-to-face, then please call 020 4525 3605.

Writing a Will with Rainbow Trust

Writing a Will gives you the confidence that your loved ones will be looked after as you protect your wishes for the future.

With our partner, Octopus Legacy, you can write a simple Will online, over the phone, or in person for FREE.

Grandfather and grandchild in bed, baby holding toy.

Extra Support

Help is available if you have any questions, and legal experts check over each Will.

If you would prefer to write your Will over the phone or face-to-face, please call:

020 4525 3605

Text "octopuslegacy" in dark blue on a dark green background.

Find Out More

For more information or to request your free Gift in Wills guide, simply visit rainbowtrust.org.uk/legacy

Free Will offer

13

Registered Charity No.1070532. Company limited by guarantee. Registered in England No. 3585123.

All images and stories may not be reproduced without expressed written permission. © 2024 Rainbow Trust Children's Charity.

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A bald child with medical tubes is embraced by an adult in a hospital setting.

Meet Ellis

Find out why your support matters.

Smiling woman in rainbow shirt and sunglasses, arms outstretched, leading a group in a race.

Upcoming events

Find out how you can get involved today!

Selfie of a smiling man and woman indoors, with an outdoor garden view through a window.

Leaving a legacy

Find out more about leaving a gift in your Will.

Dear Supporter

A message to our Supporters from Zilla B.

A smiling woman in a red jacket with a Rainbow Trust Children's Charity logo in the background.

Highlights

Scroll Down

Rainbow Trust colorful logo and tagline "Supporting Families With A Seriously Ill Child".

Back

Welcome to your Autumn/Winter edition of Families First.

Every day, families caring for a seriously ill child urgently need support as they juggle relentless hospital appointments, fear for their child’s future and the emotional and practical toll this takes. At Rainbow Trust, we believe that no family should face this alone. 

With your support, in the past year our Family Support Workers provided support to 1,532 seriously ill children and their families, a 20% increase from the year before, helping them when they need it most.

In this edition, you can read about the difference your support has made to Ellis’ family following his terrifying cancer diagnosis, and how Family Support Worker Abi is helping Emily’s family navigate an uncertain future and countless hospital appointments.

Thank you for your kindness.

Zillah Bingley, Chief Executive

Dear Supporter

A smiling woman in a red jacket with a Rainbow Trust Children's Charity logo in the background.
Two large blue quotation marks.
Two large blue quotation marks.

We were told she had a very rare neurological condition called de-novo-heterozygote variant gene SCN8A. There is no cure.  

Hearing that broke us. We were very scared. We didn’t know what to expect for our daughter, for her future. 

Now Emily is eight. She still has seizures every week and my husband Bujar and I have to be with her all the time to give her medicine and monitor her. It has been a very hard few years.  

In September 2023, Family Support Worker Abi began supporting. 

I have only just passed my driving test, and I am scared to drive alone with Emily because of her seizures. Abi picks us up and drives us to hospital appointments, which takes away that stress of driving with Emily alone, traffic jams and finding parking. We would have really struggled without this support. 

Before Abi, Bujar had to take time off work to drive us to hospital and he would lose a day's wages. We were really struggling financially. Abi’s support has helped ease that burden.  

Abi also stays with us in hospital. She plays with Emily so I have the time and energy to focus on the appointment and to talk to the doctors. This might sound small, but on those days it means everything. 

Abi has helped with so many things, like applying for a special car seat for Emily. I didn’t have the time or energy to do this on my own.  

When Emily’s condition gets too much, having Abi to talk to makes a big difference. It has helped me to feel less alone. 

We don’t know what the future holds for Emily. That is scary. But I do know that without Abi and Rainbow Trust we would still be like we were three years ago, struggling.  

Smiling young girl in a striped top against a wall of pink and white flowers and green foliage.

When Emily had her first seizure, our lives changed forever.

"Abi and
Rainbow Trust
have changed
our lives."

Woman embraces smiling child in a wheelchair outside a building entrance.

Will You Sponsor a Family Support Worker Like Abi Today?

Many more parents like Remila and Bujar are struggling with the impact of their child’s life-threatening illness. They face emotional distress, relentless practical challenges, and often financial hardship, with little relief. These families need support today.

By sponsoring a Family Support Worker like Abi, you will help Rainbow Trust provide vital support to families at the moment they need it most.

Emily had her first seizure when she was six months old.

When Emily had her first seizure, our lives changed forever.

11111Emily had her first seizure when she was six months old.

We were told she had a very rare neurological condition called de-novo-heterozygote variant gene SCN8A. There is no cure.  

Hearing that broke us. We were very scared. We didn’t know what to expect for our daughter, for her future. 

Smiling young girl in a striped top against a wall of pink and white flowers and green foliage.
Two large blue quotation marks.
Two large blue quotation marks.

Now Emily is eight. She still has seizures every week and my husband Bujar and I have to be with her all the time to give her medicine and monitor her. It has been a very hard few years.  

In September 2023, Family Support Worker Abi began supporting. 

I have only just passed my driving test, and I am scared to drive alone with Emily because of her seizures. Abi picks us up and drives us to hospital appointments, which takes away that stress of driving with Emily alone, traffic jams and finding parking. We would have really struggled without this support. 

Before Abi, Bujar had to take time off work to drive us to hospital and he would lose a day's wages. We were really struggling financially. Abi’s support has helped ease that burden.  

Abi also stays with us in hospital. She plays with Emily so I have the time and energy to focus on the appointment and to talk to the doctors. This might sound small, but on those days it means everything. 

Abi has helped with so many things, like applying for a special car seat for Emily. I didn’t have the time or energy to do this on my own.  

When Emily’s condition gets too much, having Abi to talk to makes a big difference. It has helped me to feel less alone. 

We don’t know what the future holds for Emily. That is scary. But I do know that without Abi and Rainbow Trust we would still be like we were three years ago, struggling.  

"Abi and
Rainbow Trust
have changed
our lives."

Woman embraces smiling child in a wheelchair outside a building entrance.

Will you sponsor a Family Support Worker like
Abi today?

Many more parents like Remila and Bujar are struggling with the impact of their child’s life-threatening illness. They face emotional distress, relentless practical challenges, and often financial hardship, with little relief. These families need support today.

By sponsoring a Family Support Worker like Abi, you will help Rainbow Trust provide vital support to families at the moment they need it most.

A smiling child proudly presents their colorful paper craft diorama with buildings and animals.

During an online support session with Family Support Worker Anna, Nithin, aged nine, wanted to create a pop-up card. Nithin’s sister is three and has a complex heart defect.

Smiling blonde boy in a toy digger.

Oscar, aged three, attended a Family Fun Day organised by the Southampton Care team at Paulton’s Park. His nine year-old sister Alice was diagnosed with neuroblastoma.

Toddler in pink jacket and sunglasses holds dandelion and flower bucket on a path.

Evie, four, has a genetic condition that causes tumours to grow on her nerves. She enjoyed a walk with Family Support Worker Cindy, searching for plants to make a gift for her parents.

How your support helps

Toddler in orange dress playing magnetic fishing game on carpet, catching toy sea creatures.

While her mum attended a session about talking to your child about their diagnosis, Cora, two, played with Family Support Worker Laura. Cora has recently been given the all clear after receiving treatment for neuroblastoma.

A woman takes a selfie with two babies in a double stroller in a sunny park. One baby wears sunglasses.

Family Support Worker Gina took two-year-old twins Ellis, who has a rare condition, and Ava out for a sunny walk and picnic in Manchester, allowing mum to attend an important meeting.

Smiling child in cream tracksuit plays on a yellow playground structure under a blue sky.
Smiling woman and happy child in a selfie, woman wearing a Rainbow Trust shirt.

After supporting Lara, seven, for 13 months while she awaited a heart transplant, Family Support Manager Jen had her last in-person visit with the family. Jen regularly provided respite by doing play sessions on the ward with Lara and taking her brother Jude, aged two, out on trips.

How your support helps

Two pink quotation marks.

A day in the life of a Family Support Worker

Sarah joined Rainbow Trust in January 2024 as a Family Support Worker in the Lancaster-based Care team.

In the morning, I picked up five-year-old Amelia and her granny, Lizzy, from their home. Amelia was diagnosed with a neurological disorder last September.  

Today I drove them to a hospital appointment in Lancaster. Appointments are already draining and stressful so not having to worry about parking and traffic was a weight off Lizzy’s shoulders. These appointments are also unsettling for Amelia so I brought along some sensory toys to keep her occupied. 

Afterwards I took them to a soft play where Amelia had the chance to have some fun. While she played, Lizzy and I took some time out to talk about the appointment. 

After dropping Amelia and Lizzy at home, I picked up two-year-old Rio, who has chronic lung disease, and his mum Jahmilla. Jahmilla cannot drive and, due to Rio’s oxygen tank, she struggles to get out.

Baby with nasal tube, toys on starry cushion in dark blue room with glowing stars.
Rio enjoying the sensory room
Smiling woman in burgundy Rainbow Trust polo shirt with logo: 'Supporting families with a seriously ill child'.

Ruby and her sisters doing crafts

Today I took them to the multisensory Creative Space Centre in Preston. Rio was so excited, he especially loved the bubble tube. On the way home we stopped at a shop so that Jahmilla could pick up some essential food items. I entertained Rio giving her time to focus on shopping without the complexities of moving his oxygen tank.  

I ended my day with a visit to Ruby’s family after receiving a text from her mum, Nikki, who wanted some support. Ruby is four and has, a rare condition that affects bone marrow and the pancreas. I brought along some holiday themed arts and crafts for Ruby and her sisters and provided some emotional support for Nikki. 

Every day is so different in this job due to the one-to one nature of the support we provide for families. It is very specific support that is tailored to them and their needs. It is very unique. 

 

With your help, more families can receive this vital support.

A day in the life of a Family Support Worker

Sarah joined Rainbow Trust in January 2024 as a Family Support Worker in the Lancaster-based Care team.

Smiling woman in burgundy Rainbow Trust polo shirt with logo: 'Supporting families with a seriously ill child'.

Family Support Worker Sarah

Two pink quotation marks.

In the morning, I picked up five-year-old Amelia and her granny, Lizzy, from their home. Amelia was diagnosed with a neurological disorder last September.  

Today I drove them to a hospital appointment in Lancaster. Appointments are already draining and stressful so not having to worry about parking and traffic was a weight off Lizzy’s shoulders. These appointments are also unsettling for Amelia so I brought along some sensory toys to keep her occupied. 

Afterwards I took them to a soft play where Amelia had the chance to have some fun. While she played, Lizzy and I took some time out to talk about the appointment. 

After dropping Amelia and Lizzy at home, I picked up two-year-old Rio, who has chronic lung disease, and his mum Jahmilla. Jahmilla cannot drive and, due to Rio’s oxygen tank, she struggles to get out.

Baby with nasal tube, toys on starry cushion in dark blue room with glowing stars.
Rio enjoying the sensory room

Today I took them to the multisensory Creative Space Centre in Preston. Rio was so excited, he especially loved the bubble tube. On the way home we stopped at a shop so that Jahmilla could pick up some essential food items. I entertained Rio giving her time to focus on shopping without the complexities of moving his oxygen tank.  

I ended my day with a visit to Ruby’s family after receiving a text from her mum, Nikki, who wanted some support. Ruby is four and has a rare condition that affects bone marrow and the pancreas. I brought along some holiday themed arts and crafts for Ruby and her sisters and provided some emotional support for Nikki. 

Every day is so different in this job due to the one-to one nature of the support we provide for families. It is very specific support that is tailored to them and their needs. It is very unique. 

 

With your help, more families can receive this vital support.

Three girls craft with colorful paper at a table; a dog rests underneath.

Ruby and her sisters doing crafts

“When we had our babies, we never imagined we might not
see them grow old”
 

I cannot describe the feeling of devastation, terror and shock. A feeling of pure heartbreak and desperation.
I could hardly breathe.
 

A bald child with medical tubes is embraced by an adult in a hospital setting.
Orange quotation marks on a green background.
Orange quotation marks on a green background.
Young child with decorated medical tubes and pacifier, embraced by an adult.

Jayne provided emotional support, listening to the family’s worries and concerns; respite, allowing Chloe and her husband Neil time to get some fresh air; and arts and crafts for Ellis, giving him a distraction from his treatment.  

For Chloe, Jayne’s support has been crucial as she struggled to come to terms and cope with Ellis’ diagnosis and his future. Jayne provides a safe space for Chloe, giving her the chance to offload. 

With the countless hospital appointments and treatments, Chloe has found trying to remain present for her six-year-old daughter Lily very hard. 

Jayne helps Chloe and Lily to have more one-to-one time by supporting with after school activities. Having Jayne’s support means that Chloe can spend meaningful time with Lily, without worrying about Ellis. 

Jayne provides reassurance and a sense of stability for the family at what continues to be an uncertain time. 

At the start of 2023, aged two, Ellis was admitted to hospital on several occasions with seizures. He was diagnosed with stage four neuroblastoma, a rare type of cancer, and was given a 44% chance of recovery.  

“He was terrified of everyone and everything, he became withdrawn. One minute he was playing with friends, the next he was being pinned down for cannulation and tubes down his throat.” 

Before Ellis was diagnosed, Chloe had her own business but due to Ellis’ condition she had to stop. This had a big financial impact on the family and took an emotional toll on Chloe.  

In March 2024, after being referred to Rainbow Trust, Family Support Worker Jayne started supporting the family at home and in hospital.  

neuroblastoma

Neuroblastoma is an aggressive and rare type of cancer that usually affects children under the age of five. Each year around 100 children are diagnosed with neuroblastoma in the UK. 

Orange quotation marks on a green background.
Orange quotation marks on a green background.
Young child with decorated medical tubes and pacifier, embraced by an adult.

Jayne provided emotional support, listening to the family’s worries and concerns; respite, allowing Chloe and her husband Neil time to get some fresh air; and arts and crafts for Ellis, giving him a distraction from his treatment.  

For Chloe, Jayne’s support has been crucial as she struggled to come to terms and cope with Ellis’ diagnosis and his future. Jayne provides a safe space for Chloe, giving her the chance to offload. 

With the countless hospital appointments and treatments, Chloe has found trying to remain present for her six-year-old daughter Lily very hard. 

Jayne helps Chloe and Lily to have more one-to-one time by supporting with after school activities. Having Jayne’s support means that Chloe can spend meaningful time with Lily, without worrying about Ellis. 

Jayne provides reassurance and a sense of stability for the family at what continues to be an uncertain time. 

“When we had our babies, we never imagined we might not
see them grow old”
 

At the start of 2023, aged two, Ellis was admitted to hospital on several occasions with seizures. He was diagnosed with stage four neuroblastoma, a rare type of cancer, and was given a 44% chance of recovery.  

“He was terrified of everyone and everything, he became withdrawn. One minute he was playing with friends, the next he was being pinned down for cannulation and tubes down his throat.” 

Before Ellis was diagnosed, Chloe had her own business but due to Ellis’ condition she had to stop. This had a big financial impact on the family and took an emotional toll on Chloe.  

In March 2024, after being referred to Rainbow Trust, Family Support Worker Jayne started supporting the family at home and in hospital.  

neuroblastoma

Neuroblastoma is an aggressive and rare type of cancer that usually affects children under the age of five. Each year around 100 children are diagnosed with neuroblastoma in the UK. 

A bald child with medical tubes is embraced by an adult in a hospital setting.

I cannot describe the feeling of devastation, terror and shock. A feeling of pure heartbreak and desperation. I could hardly breathe. 

Events

Get involved

With your help we can continue to make a meaningful and lasting difference to seriously ill children and their families.

There are many ways to get involved.

London Carol Concert

4 December 2025
Celebrate the magic of Christmas at our candlelit Carol Concert.

Brighton Marathon

12 April 2026
Take on one of the UK’s biggest and best marathons in the beautiful coastal city of Brighton.

Bath 50 Ultra Challenge

28 March 2026
Walk, jog or run a distance of your choice through stunning countryside with panoramic views.

Other Challenge Events

Dates throughout the year in a number of world-famous marathons and half marathon events.

London Landmarks Half Marathon

12 April 2026
Not your typical half marathon, it is a sightseeing adventure on the run!

Join team Rainbow Trust! Find out more and sign up:

Show your support and join us, or create your own event or challenge in your community or work.

Rainbow Trust's Weekly Lottery: Pot of gold, rainbow.

Don't miss out
on winning
up to

£25,000

every week!

Terms and conditions apply. Rainbow Trust Children's Charity is licensed and regulated in Great Britain by Mole Valley District Council under account number 046790.

Celebrate with us

If you have a special occasion coming up, a wedding, anniversary, baby shower or birthday, make your celebration even more special by fundraising to support seriously ill children and their families.

Orange quotation marks on a green background.
Orange quotation marks on a green background.

I am 41 and I live with my five-year-old son Freddie and my partner Adam. When Freddie was born, he spent a week in hospital with breathing difficulties. 

It was terrifying. Finding out that your newborn is unwell and you can’t take it away from them is so scary and overwhelming.  

We are lucky that Freddie made a full recovery. But it made me realise how tough it is for families with seriously ill children, because some of them may never get that moment of “we are past that now”.

That is why Adam and I decided to leave a gift in our Wills to Rainbow Trust. 

Writing a Will may appear confusing but the process was very simple as Rainbow Trust has partnered with Octopus Legacy, a user-friendly and easy to understand Will writing service. 

If you need to write a Will, this is a win-win: a free service and it is going to support seriously ill children should you decide to include a gift to Rainbow Trust. 

It is nice knowing that something good is going to happen and I am going to leave a legacy. 

Selfie of a smiling man and woman indoors, with an outdoor garden view through a window.

Adam
and
Stacey

Free Will offer

Writing a Will gives you the confidence that your loved ones will be looked after as you protect your wishes for the future. With our partner, Octopus Legacy, you can write a simple Will online, over the phone or in person for FREE. Help is available if you have any questions and legal experts check over each Will. 

With our partner, Octopus Legacy, you can write a simple Will online, over the phone or in person for FREE. Help is available if you have any questions and legal experts check over each Will. If you would prefer to write your Will over the phone or face-to-face, then please call 020 4525 3605. 

If you would prefer to write your Will over the phone or face-to-face, then please call 020 4525 3605.

Text "octopuslegacy" in dark blue on a dark green background.

My gift is a promise for the future

Stacey and her partner Adam are leaving a gift to Rainbow Trust in their Wills.

Registered Charity No.1070532. Company limited by guarantee. Registered in England No. 3585123.

All images and stories may not be reproduced without expressed written permission. © 2024 Rainbow Trust Children's Charity.

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