Alex, The Leukodystrophy Charity

Children's support tools for a Rare Disease

We are raising funds so we can author and illustrate a book designed to support children affected by ALD and their siblings. The primary goal is to support children, to build emotional resilience and openness to talk and ask questions following the diagnosis of a rare disease.

history Campaign has now closed

It ran from 12:00 PM, 30 November 2021 to 12:00 PM, 7 December 2021

Registered Charity in England and Wales (1106008)

open_in_new https://www.alextlc.org/
Check mark Match funded

Campaign target

£8,000

Amount raised

£8,020

Donations

36

Championed by The Hospital Saturday Fund

    Categories

  • Health/WellbeingHealth/Wellbeing
  • Information/AdviceInformation/Advice
  • Mental HealthMental Health

    Helping

  • Children (3-18)Children (3-18)
  • OtherOther

Location

United Kingdom

Situation

Our research shows how both an affected child and their sibling’s life can change following diagnosis. For the sibling of the affected child they can easily become a ‘shadow’. Often the needs of the affected child, e.g. hospital appointments, take priority over the siblings. Family dynamics will change, children will see their parents upset, they will hear a lot of confusing words they do not understand. There are no child focused resources available for the siblings of affected children.

Solution

A resource to be utilised by families following a diagnosis of ALD, where sometimes more than one child is diagnosed. Described from the perspective of a child whose sibling has been diagnosed with ALD it will show the experience of the situation, one that is relatable and understandable for children. Alongside practical information, we’ll include the emotional support with key messaging being of hope, playfulness, joy and how a sibling’s relationship can play a supportive role.

  • You’ve got the nurses and the play specialists and everyone’s there and they are very focused on the child with ALD, making sure they are alright. The siblings can get forgotten about.

    — Anon

  • Siblings are living with the reality; overhearing conversations and see what’s go on. Whereas sometimes, as the child with ALD deteriorates, they are less aware of what’s happening. The book would be better to be targeted at to try and explain it to the sibling.

    — A Parent