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 may have epilepsy. Some children may not have any learning disabilities but be physically disabled whilst others are physically unaffected 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. Our son Roop is a SWAN and over the last 3 years has also developed epilepsy, adding another layer to his existing, complex needs.  Lockdown has been particularly challenging for us and all the other families in a similar position, who have not had usual access to support.  As all charities, this has meant a further depletion of support which is absolutely necessary for our families. SWAN is a life-line for many.

Money raised for SWAN UK will be used to provide services for families affected by a syndrome without a name. These could include organising stay and play sessions or family events, developing information materials or putting on an information event. The money you donate could also help to produce leaflets on subjects like genetics in education or social care rights. Here are some examples of how far your money can go towards supporting SWAN UK families.

• £30 pays for a big bunch of balloons to be sent to a child having an extended stay in hospital.
• £50 pays for a whole family to attend a big day out at a major attraction.
• £1,000 covers the cost of training and supporting a SWAN UK Parent Rep to educate local care professionals and services about undiagnosed genetic conditions.
• £2,500 allows us to run a day trip for 25 families to make precious memories.
• £5,000 pays for an all-day information event about undiagnosed genetic conditions