Youth / Respite Support Services

There are currently six Youth / Respite Workers (YRWs) based in the east, south, south east, midlands, west and north-east regions, who work directly with young people who have muscular dystrophy and their families. The support offered by the youth service is beneficial to the young person with MD as well as their parents / carers. The support offered by the youth service can be divided into 5 main areas:

1. Home Visit

YRWs work on a one to one basis with members in their own homes, engaging in activities such as arts & crafts, playing board games, doing homework, watching TV, listening to music, playing computer games, or just having a friendly chat. This interaction is vital for the member to build up a trusting relationship with the YRW. It also gives their parents / carers some free time to do whatever they wish, knowing that their child is comfortable and well looked after.

2. Social Outings

Each YRW is fully trained in MiDAS (mini-bus driver awareness scheme) and is equipped with a fully wheelchair accessible van which can transport up to 5 people. This gives the YRW the freedom to collect members from home / school and go on trips, encouraging independence. Social outings include trips to the cinema, shopping, going to the circus, bowling, or any activity the member would like to take part in.

3. Summer / Easter Camps

MDI camps are an integral part of the YRW calendar. They have been described as a “working holiday” by the YRWs, giving them the opportunity to get to know the members in a relaxed, holiday atmosphere. These camps are open to members from 11 years of age, and there are many different activities on offer. Some of these include water based activities, such as swimming and canoeing, nights to the dog track, sight-seeing, shopping and a wide range of other group activities.

4. Youth Clubs

YRWs also organise youth clubs / outings, allowing young people with muscular dystrophy to meet up with other members with similar conditions. This type of social interaction can boost the member’s self-esteem and confidence, while also allowing young people to make new friendships and interact socially. Some examples of youth clubs include power soccer, drama workshops, group outings to the cinema / bowling and computer workshops. YRWs also liaise with mainstream youth organisations, and encourage members to get involved where possible.

5. Hospital Respite

It is a diffiult time when anybody is in hospital, but it can be particularly difficult when a child is hospitalised. YRWs offer to visit young members when they are in hospital and stay with them, allowing their parents / carers to go home or have a break for a few hours. This has proven to be a crucial support over the years, with some parents saying it was a life-line to them during such a difficult time.

How to access the Youth / Respite Service

To access the MDI Youth / Respite Service contact MDI’s  Head office on

1. Muscular Dystrophies

  • Becker muscular dystrophy
  • Duchenne muscular dystrophy
  • Manifesting carrier of Duchenne
  • Congenital muscular dystrophy
  •     •  General
  •     •  MDC1A (merosin-deficient congenital muscular dystrophy)
  •     •  Rigid spine syndrome (RSS)
  •     •  Ullrich congenital muscular dystrophies
  •     •  Bethlem myopathy
  • Emery-Dreifuss muscular dystrophy
  • Facioscapulohumeral muscular dystrophy
  • Limb-girdle types of muscular dystrophy (LGMD)
  •     •  General
  •     •  LGMD 1B (also known as Laminopathy)
  •     •  LGMD 1C (also known as Caveolinopathy)
  •     •  LGMD 2A (also known as Calpainopathy)
  •     •  LGMD 2B (also known as Dysferlinopathy)
  •     •  LGMD 2I
  • Ocular myopathies including ocularopharangeal muscular dystrophy

2. Myotonic Disorders

  • Congenital Myotonic Dystrophy
  • Myotonia
  • Myotonic Dystrophy

3. Congenital Myopathies

  • Central Core Myopathy
  • Congenital Fibre-type Disproportion Myopathy
  • Minicore (Multicore) myopathy
  • Myotubular or Centronuclear myopathy
  • Nemaline myopathy

4. Mitochondrial Myopathies

  • Mitochondrial Myopathies

5. Metabolic Disorders

  • Metabolic disorders (general)
  • McArdle’s Disease
  • Pompe’s Disease

6. Periodic Paralyses

  • Periodic Paralyses

7. Autoimmune Myositis

  • Polymyositis, Dermatomyositis and Sarcoid myopathy
  • Juvenile dermatomyositis
  • Inclusion body myositis

8. Spinal Muscular Atrophies

  • Severe (Type I)
  • Intermediate (Type II)
  • Mild (Type III)
  • Adult spinal muscular atrophy

9. Hereditary Motor and Sensory Neuropathies

  • (Also known as Charcot-Marie-Tooth or Peroneal muscular atrophy)

10. Disorders of the Neuromuscular Junction

  • Congenital myasthenic syndromes
  • Myasthenia Gravis

11. Friedreich’s Ataxia

  • Friedreich’s Ataxia

12. Other (Please Specify)

13. Unspecified