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MarvellousIssue 3 - March 2015

Peppa-Pig-World-trip Supporter Newsletter

NewsMatilda and her mum enjoy some quality time

www.roalddahlcharity.orgwww.roalddahlcharity.org

Roald Dahl’s Marvellous Children’s Charity

81a High Street, Great Missenden, Buckinghamshire, HP16 0AL. Tel: 01494 890465 Fax: 01494 890459 enquiries@roalddahlcharity.org www.roalddahlcharity.org

Registered Charity No: 1137409Company Limited by Guarantee No: 7340518Illustrations © Quentin BlakeRoald Dahl is a registered trademark of Roald Dahl Nominee Ltd

Knowing that your child might not live past the age of twelve is almost unimaginable. Sadly for Matilda’s mum this is her reality. Matilda’s life-limiting condition is known as Late Infantile Batten Disease and her future is uncertain. Matilda is just five years old.

Soon after Matilda was diagnosed, she and her mum began taking part in a new clinical trial in London. This means that every fortnight, they have to travel the long distance to London. This alongside school, therapies, medical care and financial constraints, means they have very little time to have fun, play and relax together.

We knew that having an opportunity for a day out together could be hugely beneficial for both Matilda and her mum. Taking time away from the strain of their daily life could give them time to focus on being a family, helping them to be stronger together to face their future. So, with help from Roald

The new Roald Dahl nurse - our first to focus exclusively on rare diseases in children - will support the long-term wellbeing of children and young people living with serious rare illnesses. The post will provide emotional support, especially through the important transition from paediatric to adult care, for young people such as Fiona and Laura.

Fiona and her sister Laura were toddlers when they were diagnosed with homocystinuria - a rare genetic disorder that affects one in every 200,000 people. It means they will have problems with their eye sight and bones, as well as increased risk of blood clots. The girls, now teenagers, control their life-long condition through weekly blood tests, medication and a strict protein-controlled diet.

Their mum Carol said: "Living with homocystinuria has been extremely challenging. The introduction of a Roald Dahl nurse to help with the psychological support for children and families will be a fantastic benefit, as there are often few other families to share experiences with."

The post will itself be rare in the UK, because the nurse will be helping children affected by a broad range of rare illnesses. It will also be unique because children and young people with rare illnesses, and their families, will be given the opportunity to help design the role.

Matthew Boazman, director of strategy and planning at Birmingham Children's Hospital said:

"This new Roald Dahl nurse will help us to deliver the very best treatment for our children and their families, providing access to peer support, coordination of care and ongoing family support."

to ensure that patients remain the top priority.

Recently, we attended a debate on the issue in Parliament, where MPs were able to express the challenges their constituents with complex conditions face when accessing treatment.

The upcoming election is an important opportunity to ensure that the new government places children and young

Sickle cell is painful, which can result in frequent time off school. It is also a relatively ‘hidden’ condition and is not well understood by others. As a result it can be incredibly challenging to come to terms with. It can lead to a lonely life for a teenager, often accompanied by depression. Many of the projects we support therefore focus on raising the aspirations and self-esteem of young people, such as Specialist Sickle Cell and Thalassemia Nurse Adewumi Ajayi’s project, ‘The Future is in Your Hands’. The project created and ran new support sessions for young people with sickle cell in Nottingham to help improve their wellbeing. They had access to expert clinical psychologists as part of their care, as well as valuable opportunities to make new friends with other young people with sickle cell.

The success of this innovation project gave us an opportunity to share what has been learned more widely and to get other projects off the ground.

Thank you for helping us to ensure that we can continue to work in this under supported area.

people’s health and wellbeing at the top of the national agenda. We will continue to work in partnership with the SHCA and our other networks in the lead up to the election and beyond, to influence the delivery of better outcomes for seriously ill children, young people and their families. The election may change it all again - we’ll keep you posted!

Dahl’s Marvellous Children’s Charity, Matilda and her mum were able to spend a day at Peppa Pig World. A day that they will both cherish forever.

Matilda’s mum said: “Matilda absolutely loved Peppa Pig World. Life has not been easy with taking part in the clinical trial and living with Batten Disease. Matilda loved all of the fast rides and laughed so much. It was really lovely to see her smile and laugh when things have been so difficult recently. We really did have the best day and we didn’t want it to end. Thank you so much for putting a big smile on my little girl’s face.”

By giving families like Matilda’s the opportunity to spend quality time together having fun and creating happy memories, we are arming them with the strength to face any difficult and emotional times that might lie ahead.

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Many of the children and young people we support require treatment through NHS specialised services. These services cannot sensibly be planned at a local level, given the rarity or complexity of the conditions involved. If only a handful of children in the country are affected by a condition, access to services can become a postcode lottery if not handled on a national basis.

NHS England is considering changes to how these services are delivered, and we are working closely with the Specialised Healthcare Alliance (SHCA)

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Living-with-a-rare-conditionWe are delighted to announce our partnership with Birmingham Children’s Hospital to create a new Roald Dahl nurse post to support children living with rare conditions.

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Sickle cell anaemia is a rare condition affecting the blood. It is a life-long condition which can cause lethargy, bouts of extreme pain and even strokes. Six Roald Dahl nurses specialise in this area, and we also support innovation through some of our ‘Marvellous Nurse Inventing Room’ projects to help find new ways to support young people with this condition.

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the form of something physical. It might be that they need family therapy to come to terms with what is happening to them, or time away from hospital to bond as a family. Support from one of our Stronger Families grants towards the cost of counselling, family days or special activities can mean the difference between a family on the brink of collapse and a family that can find the courage to continue.

Thanks to your support we can continue to help families like Matilda’s, who you can read about on the back of this newsletter.

In 2014 we funded our 50th Roald Dahl nurse post. To celebrate this momentous occasion we brought our specialist Roald Dahl nurses together in London for a conference packed with talks and workshops.

100% of delegates felt the event inspired and motivated them in their work to make life better for seriously ill children. A quarter said the event did this well. Three quarters said it did this very well.

One nurse told us it, “Recharged my batteries of motivation and encouraged me to think outside my epilepsy bubble. Very inspirational.”

Our Marvellous fundraising team is buzzing with excitement about working with Busy Bees nurseries this year to raise thousands of pounds to help seriously ill children. 82 nurseries across the south east of England have chosen to support Roald Dahl’s Marvellous Children’s Charity, identifying it as a small, yet vital charity dedicated to improving the lives of children in the UK who are coping with serious health challenges.

Cheryl Creaser, Divisional Director for

For their Bronze Duke of Edinburgh Award, Max and Will from Buckinghamshire are doing some marvellous fundraising. They have already raised over £90 by setting up a stall in a local supermarket, and they have plans to do a talk at their school and hold a bake sale. Thank you boys, for all your hard work so far!

10 year old Bonnie from Scunthorpe has decided to help seriously ill children by doing a sponsored 10 mile cycle ride in Clumber Park, Worksop. She will be joined on her cycling adventure by her sprightly grandad, Carl. Bonnie told us she was inspired by her friend Jack to get involved in charity work, “I did some research and thought Roald Dahl’s Marvellous Children’s Charity sounded perfect for me! Poppa and I love bike riding and Clumber is a special place to us.” Good luck Bonnie and Carl, we hope you have lots of fun on your journey.

To celebrate our 50th Roald Dahl nurse post and Roald Dahl Day last year, a band of brave supporters, including Roald Dahl nurse Jodi, donned green wigs and orange faces and took to the skies. The Oompa-Loompa skydive was a huge success with over £32,000 being raised to help seriously ill children. Thanks go to everyone involved for raising such a fantastic amount!

When a child is diagnosed with a rare condition, it affects the whole family. Parents often have an overwhelming sense of grief for the ‘loss’ of the healthy child and that child’s future, leading to feelings of guilt. One or both parents may need to give up working, lowering their self-esteem. Siblings can experience feelings of resentment, and the child living with a rare condition can feel like a burden, find it hard to accept their condition and become very down about themselves and their future. Families under this sort of strain often don’t manage to stay together.

We know that families in these situations need help, but that help is not always in

To top off this whipple-scrumptious day, our nurses were treated to see the Charlie and the Chocolate Factory – The New Musical at an event hosted by Warner Bros.UK at Theatre Royal Drury Lane. The nurses were joined by a surprise special guest, actress and our marvellous patron, Julie Walters.

Julie said, “Roald Dahl nurses are special for me, because I was a nurse myself many years ago, and I also had a child that was diagnosed with acute lymphoblastic leukaemia when she was two. Roald Dahl nurses are really needed – they are like angels not only to children and young people, but their families too.”

• TheaveragecaseloadofaRoald Dahl nurse is 334 patients.

• RoaldDahlnursesarenot regularwardnurses.Theyhave highly specialised medical knowledge and skills and many know more about their field of expertise than some doctors.

• Despiteevidenceofthe cost-effectivenessofspecialist nursesandimprovedpatient outcomes, specialist nursing roles are often one of the first to be cut during periods of financial difficulty – during the 2005/06 NHS deficit crisis nearly 1 in 4 faced redundancy (Royal College of Nursing December 2014).

Our 50th Roald Dahl nurse has arrived!LizOdehisnowourRoald Dahl nurse based within theHaematologyServiceatKings College Hospital, one of London's largest and busiest teachinghospitals.Lizsays,

”I’m very proud to be the 50th Roald Dahl nurse in the UK. Specialist children’s nurses are so important. We show children that coming to hospital doesn’t have to be scary, and we support them in leading a full life outside the hospital too.”

Did-you-know? We’re-all-buzzing-about-�Marvellous-Busy-Bees

British 10k London Run Sunday 12th July

Have your own place?

Dahlicious Dress Up Day Friday 25th September

JoinTeamMarvellousforanexhilarating 10k run taking in the sights of the capital. We haveguaranteedplacesinthispopular run – contact us on fundraising@roalddahlcharity.org

Thereareahugevarietyofruns,cycles,walksandskydivestakingplace around the UK throughout theyear.Ifyouhavesecuredyour own place and would like to fundraise for us, then we wouldlovetohearfromyou!

We’re delighted that so many schools took part in Dahlicious Dress Up Day in 2014 - donations arestillcominginandwe’veraised nearly £70,000 so far – ourhugethankstoeveryonewho took part. The next Dahlicious Dress Up Day is Friday 25th September 2015, so there’s plenty of time to get your costumes organised.

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This time last year we shared Bradley’s story. Bradley has tuberous sclerosis, which causes epilepsy, and is cared for by his Roald Dahl nurse Anne in Liverpool. Last year we invited Bradley, his mum Tracey, and Anne to a special event to celebrate Felicity Dahl becoming charity President alongside Sir Quentin Blake.

We caught up with Anne at the Roald Dahl Nurse’s Conference to talk about Bradley and how much he enjoyed the day.

Fantastic-FundraisersA big THANK YOU t

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“He’s quite a shy, retiring young man and on the day he absolutely blossomed. He had a fantastic time. He actually described it as the best day of his life when we were going home.”

Update-from-Bradley

Busy Bees told us, “We think that children deserve the best start to life they can possibly get. We are delighted to be supporting the charity and are looking forward to creating some wonderful activities and events for our children at our nurseries and within their local communities over the next 12 months.”

Clare Eynon, Corporate Fundraiser for Marvellous, is excited about the year ahead,

“We’re thrilled to be working with Busy Bees and helping the children, nursery staff and parents to dress up, bake and have a splendiferous time whilst raising vital funds for seriously ill children.”

If your nursery, school or company is interested in adopting Roald Dahl’s Marvellous Children’s Charity as their Charity of the Year, please get in touch with our fundraising team on fundraising@roalddahlcharity.org