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



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."

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.

How your support helps
How your support helps
How your support helps

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.

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.

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

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.

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.


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.

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.


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.




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.

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.
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.

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.

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.

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

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.

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.


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


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.

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.
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.

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

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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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



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."

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.



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."

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.

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.

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.

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

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.

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.


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

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.


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.

Family Support Worker Sarah

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.

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.

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.




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.



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.

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.
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.


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.

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.

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.








