Why do families living with rare conditions like Angelman syndrome need our support?
DID YOU KNOW?
Angelman syndrome occurs in only 1 in 15,000 births.
There are 7000 different rare conditions.
And 3.5 million people in the UK living with them.
People living with Angelman syndrome and other genetic and rare conditions face a lifetime of complex care. They need vital support from the NHS, social care and education services to live their life to the full, but with growing needs and tightening budgets, this means an exhausting battle to get what is needed and too often families trying to self-fund what is missing.
A study by Scope in 2019 showed that families with disabled children faced average additional costs of £581 a month. Applying inflation, this sum conservatively looks like £655 a month today.
Money is needed for specialised equipment for mobility, education, safety and for therapies including physiotherapy, vital to give a child the best chance of walking and speech & language therapy to develop a child’s communication. Parents can often find themselves funding more than £1,000 a month on these essential interventions. Raising a disabled child is three times the cost of raising a non-disabled child.
This is further impacted by the reduced economic activity of parents of disabled children who become the main carers for their child, often into adulthood. This is both caused by and compounded by the higher cost of childcare for disabled children.
One of Spread Your Wings’ charitable objectives is to support families with this financial need. In 2025, we have reserved £50,000 for this purpose. To help as many families as possible, we restrict each individual grant to £500. We would love to increase this fund and lift the restriction to £1,000. With your help, we can. If you are able, please donate to us on the link below.
If you would like to know more about Angelman syndrome and about the work of Spread Your Wings, please visit our website. If you help us in any way, get in touch and if you can give any money, then please donate. We know that not every one can do this, but please sign-up for our newsletter or follow us on social media or website.
Registered charity number: 1201650 (Registered with the Fundraising Regulator)
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