Information and advice for children and young people affected by aplastic anaemia

Welcome to MarrowKidz from The Aplastic Anaemia Trust. Here you can find resources for children and young people affected by aplastic anaemia - and for their families, friends and support networks. Select your age range above to browse information relevant to you.

A big thank you to the National Lottery Community Fund - we couldn't have done this without you!

The Families Project was founded in October 2022 to support families of children living with aplastic anaemia.  This includes parents, grandparents, aunts, uncles, siblings and anyone else within the family unit who has been affected by aplastic anaemia. 

The help we can offer includes but is not limited to the following:

  • one to one support sessions
  • group sessions
  • expert-led webinars
  • in person coffee mornings (location dependent)
  • signposting to other relevant agencies
  • personalised benefits advice
  • bespoke emotional health support through our partnership with Maggie's
  • information through the Aplastic Anaemia Trust leaflets
  • buddying system with our Youth Board
  • membership of the Youth Board for young people between the ages of 17 and 25.
  • access to the Managing Stress and Living with Uncertainty courses
  • and much more

Bespoke Support

The support we give is tailored around the needs and wishes of individual families.    

We understand that a diagnosis of aplastic anaemia impacts the whole family, not just the person who is ill.  That's why we are so excited about this project which allows us to develop a holistic support mechanism for the whole family.

We do this by:

  • Assessing each family on an individual basis
  • Providing them with the tools and information they need to make informed decisions to best support their child
  • Ensuring other members of the family also have access to support

Youth Board

Another important part of the project is the Youth Board who have been actively sharing their experiences to ensure that we offer young people and children the very best possible support. 

Ongoing meetings with the Youth Board take place and the members share their experiences of their own lengthy hospital stays and feedback to us the resources they believed would have the most beneficial and positive impact on a child’s hospital stay. 

One outcome from these meetings was the development of a 'Bravery Box' for children to receive whilst in hospital.  

The Bravery Boxes consist of a personalised drinking bottle, a homemade knitted blanket, a tablet (to access the Marrowkidz resources), fluffy socks, sensory toys, a brand new MarrowKidz Hospital Activity book also designed by the Youth Board, sweets, reading and writing books and a variety of small toys. 

Buddying Scheme for Young People

The Youth Board have also set up a 'buddying scheme' which allows them to be matched with young people who might benefit from a mentor or buddy, of a similar age with similar experiences.  If you are a young person who would like to speak to another young person in a similar situation to yourself, then please get in touch with [email protected] and she will put you in touch with a Youth Board Member.

The Youth Board are always looking for new members, everyone is welcome and if you would like to know more please see our Youth Board page. 

The project is growing

We are actively working with 13 families within the project and 11 of these children have already received a Bravery Box.  All families receive different levels of support depending on their needs.  The project is led by Zoe Smith from the Support and Outreach team.  All families receive regular check-ins and are given access to one of the Support and Outreach team members, Sam, Kim or Zoe.   

Please get in touch

We know that sometimes it’s difficult to reach out for support when you are going through a traumatic time but please do drop us a message.  We are here for you and would love to offer you the support you need.

Zoe Smith

[email protected]

0300 102 3202

The Families Project is supported by the Pears Foundation and Contact