- 10 August 2009 - We are not alone
- 5 November 2009 - Statement on Baby RB
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.
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
5 November 2009
The myasthenickids.org support network and MGA Children’s Branch were established in August and September 2009 by eight families affected by the rare and complex childhood myasthenias that came together to share their experiences, learn from each other, help and support each other. We are now in contact with 21 families and estimate that there may be up to 60 in total in the UK.
Families in this new group are united in their desire that the case of Baby RB be reviewed by the leading experts in the specialist care of children with, and research into, congenital myasthenic syndrome (CMS) at the Oxford Radcliff Hospitals’ Congenital Myasthenia Service, Great Ormond Street Hospital and the Evelina Children’s Hospital at Guys & St Thomas.
We can make no comment on the case in any official capacity as the full facts are not yet known. We are however speaking, as parents, to the journalist that broke this story in the Sunday Telegraph on 1 November, Joani Walsh, about our own experiences as the parents of children with CMS.
As an indication of our strong feelings around this most distressing situation we have reproduced below a letter to the editor of the Daily Mail written yesterday (4 November) by a grandmother of two of our group’s children.
We deeply regret that our group was not established in time to connect with and support this family. Our thoughts and prayers are with Baby RB, his mother and his father.
I have two grandsons aged 13 and 9 who have congenital myasthenia, the same condition as Baby RB. The older boy spent many months in hospital in his infancy and had breathing and swallowing difficulties and was tube fed. The second child had similar difficulties but because he was diagnosed earlier was on suitable medication from the start. The older boy cannot walk and uses a wheelchair and has fluctuating and severe muscle weakness and his brother can walk short distances and uses a wheelchair when tired but also has fluctuating, muscle weakness. Both boys have been in hospital occasionally and the elder has ventilation at night. Suction was frequent when they were younger but as they have grown older their condition has improved. They go to mainstream school, enjoy having friends over, love music, concerts, cinema, going to football matches and generally lead a full life, They are well adjusted and happy and while they have had their share of problems and caused concern they have been a great joy to their family and friends.
I do not minimise the problems that will arise in bringing up a child with congenital myasthenia and I know it has not been easy for our family but there has been misrepresentation in the media about what can be achieved. It takes time to adjust to medication and each case is different but the prognosis is not hopeless. I am very uneasy that a precedent could be set because of limited movement and an inability to smile. It has been reported that the clinician in Baby RB's case felt that to exist in this world one has to have a few basic fundamentals, to be able to cough, have a gag reflex and respond to painful stimuli and be able to breathe . Well, my grandsons at times have not had any of these abilities but fortunately doctors did not think their existence was impoverished and so they have been able to live a full and happy life.
Congenital myasthenia is life threatening but not life limiting. The clinician is reported as saying that we owe it to these children with life limiting disabilities to make sure they have a dignified death. I do not want my grandchildren to have a dignified death, I would rather they had a right to life.
10 August 2009
We are not alone!
Families of children with myasthenia met together for the first MGA Children’s Weekend in Marlow on the first weekend in August 2009.
Eight families from across the country travelled to the two day event to share their stories and make new friends – as well as visit Legoland and Chessington World of Adventure thanks to the Merlin’s Magic Wand charity.
MGA chief executive, Alasdair Nimmo, came to the Saturday morning session to meet us and hear about our experiences as families living with myasthenic children.
All the families have experienced difficult times in getting initial diagnoses for our often seriously ill babies and young children. Many have had frightening emergency episodes and long stays in hospitals. All of us agreed that it had been a lonely path at times but that meeting other families in the same situation was enormously beneficial; as a group we can support each other and our children.
Apart from the children all having a wonderful time, the defining characteristic of the weekend was talk. People talked in the workshops, over breakfast, at lunch, at dinner, in the swimming pool, at the theme park and in the bar. There was just so much to say: so much knowledge to share, information to exchange and help on offer - from accessing the right health specialists and support through to adapting homes to suit children’s needs and battling with education authorities for the right support for our children to access their education.
As a group, we would like to thank the MGA for organising this weekend from the bottom of our hearts; it has meant so much to each and every one of us. We are no longer alone.
Click here to see more about our weekend.