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Tragic lack of awareness of, and adequate support for, Congenital Myasthenic Syndrome

Article posted on 10 November 2009 Leave a Comment

Archive 10 November 2009

Statement on Baby RB and father’s withdrawal today of his opposition to the application to discontinue life support

Tragic lack of awareness of, and adequate support for, Congenital Myasthenic Syndrome

Our hearts and prayers go out to Baby RB and his parents. We do not know the full facts of this tragic case and therefore cannot pretend to have an understanding of why this momentous decision has been taken.

Whilst we struggle to understand the decision we would make no attempt to condemn Baby RB’s parents as we believe that they are acting in what they see as the best interests of their precious and much loved little boy.

However, we believe that this desperately sad case highlights the woeful lack of awareness of Congenital Myasthenic Syndromes outside of the specialist paediatric neuromuscular centres. We do not believe that this is conducive to ensuring quick diagnoses, appropriate and proactive medical management and thus successful outcomes for children with these rare and complex conditions.

It is imperative that awareness of CMS is raised across the medical community in order to prevent such tragedies happening in future. We would urge the government to fund, as a matter of urgency, the coordination and dissemination of the collective learning on all such rare diseases across the wider body of the NHS.

We know from experience that being the parent of such a child is both frightening and isolating, often involving lengthy hospital stays and medical emergencies; that diagnoses away from the centres of expertise is lengthy and fraught with delay – and that misdiagnoses occur. We know that early proactive management of the condition significantly raises the likelihood of successful outcomes.

We also know that there is little in the way of support for parents in these devastating situations.

A group of us parents of children affected by childhood myathenias came together in August 2009 to form the myasthenickids.org support network in order to connect with each other and form a base for reaching out to other such parents and raising awareness of both the condition and the established centres of excellence.

This work was supported by the MGA and, in September 2009, the MGA Children’s Branch was established. We are now in contact with 27 families and estimate that there may be up to 60 in total in the UK.

We deeply regret that our group was not established in time to connect with and support this family.

Our thoughts and prayers, meanwhile, remain with Baby RB, his mother and his father.

Signed,

Helen Bedford, secretary, MGA Children’s Branch and parent of child with CMS
Melissa Jones, chairman, MGA Children’s Branch and parent of child with CMS
Kerry Webster, founding branch member and parent of child with CMS
Tracey Cockburn, founding branch member and parent of child with CMS
Rachel Collins, founding branch member and parent of child with CMS
Alison Miles, founding branch member and parent of child with CMS

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