Undiagnosed Children’s Day is a nationwide event to raise awareness of children with undiagnosed genetic conditions, also known as syndromes without a name.
My Family, Our Needs has teamed up with SWAN UK (syndromes without a name UK) to learn more about how families can access the help they need.
Why do we need Undiagnosed Children’s Day?
Approximately 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that it is often impossible to diagnose.
Some children affected by a syndrome without a name might be described as having global developmental delay or failure to thrive. They might have learning disabilities and/or physical disabilities. They can sometimes have complex medical needs and epilepsy. Some children may not have any learning disabilities but are physically disabled, while others are physically fine but have learning disabilities. Children affected by a syndrome without a name can have a range of different symptoms and each child is likely to be affected differently.
What is consistent though, is the fact that life for the families of these children is extremely isolating. Without a diagnosis families can struggle to access the right support and have no idea what the future holds for their child – will they walk? Will they talk? What is their life expectancy? How will it affect future children? There are lots of things to consider and it can feel overwhelming at times.
What help is there for families?
SWAN UK (syndromes without a name) is the only dedicated support network in the UK for these families. SWAN UK supports families in hospital and at home, offering 24/7 access to support and information and runs free family events to bring families together. They are run by the charity Genetic Alliance UK.
SWAN UK’s big ambition is that every family affected by a syndrome without a name has the support they need, when they need it, regardless of whether they have a diagnosis or not.
With so many more families out there who could benefit from support and guidance, SWAN UK have set themselves a target to find those families and double their membership in 2017.
SWAN UK enables families to:
- Make contact with other families who understand the unique challenges of raising a child affected by an undiagnosed genetic condition.
- Attend free, fun whole-family events like the growing number of local stay and play sessions or regional day trips such as to theme parks like Peppa Pig World and Flamingo Land.
- Access 24/7 information and support through online forums.
- Get opportunities to help raise awareness by speaking at events, sharing their story.
- Develop personal and professional skills by volunteering as a SWAN UK Parent Rep.
- SWAN_UK also sends children balloons when they are in hospital to help cheer them up.
What can you do to help raise awareness of Undiagnosed Children’s Day?
- Change your profile picture on your social media accounts, share these with friends, family and colleagues and encourage them to share theirs too.
- Take part in SWAN UK’s Instagram challenge to increase engagement and have some fun.
- Take part in the SWAN UK blogging challenge.
- Chat to SWAN UK members who will be taking over their Twitter today.
- Help recruit families who may need support. This could be through handing out leaflets and registration forms or asking any professionals you come into contact with if they’ve heard about SWAN UK and if they would like any resources. You can download a recruiter pack.
If you want to connect with people about Undiagnosed Children’s Day, you can use the hashtag #undiagnosed
If you would like to donate you can text SWAN11 £3 (or any amount up to £10) to 70070. You can also donate online or by post, visit www.undiagnosed.org.uk/donate/ for more information.
My Family, Our Needs spoke to Mum Maura McCrystal about life as the parent of a child with an undiagnosed condition.
Support network available for families of children and young adults with undiagnosed genetic conditions in the UK.