RETT UK

Rett Syndrome is a rare neurological disorder that becomes apparent after a year or so of near normal development, as the child, mainly females, regresses and loses skills including the ability to walk, talk and feed themselves. It can lead to children needing lifelong 24/7 care during which various conditions can appear including epilepsy, scoliosis and breathing problems.

Rett UK provides emotional and practical support to families affected by this rare, devastating neurological disorder.

In March this year, we donated £2000 to Rett UK to fund a fully qualified and experienced music therapist to provide 1:1 sessions for children with Rett Syndrome and an end of day session for the families at 3 regional events.

The music therapist works individually with each child and their parent carers to show them how music therapy can be used to support communication, hand use, emotional well-being and even calm breathing. The music therapist gives the family activities they can use at home with a variety of instruments and things they will have at home anyway.

There are normally 130 people at each of the 3 annual events. Our funding covered the cost of a music therapist at each of the events in 2019.

“Thank you so much for the cheque towards music therapy at our regional days, being able to offer this to families means so much to them, as often this is not a service that is on offer on a regular basis.” 

Julie Benson, Family Support Manager, Rett UK.