MGA News February 1997

Sarah Wallace is a mother with two children who both have Congenital Myasthenia. At a meeting of the Merton and District Branch in South West London we had a long conversation about the need to meet others who are in a similar situation to hers.

The MGA News has also published a letter in the Spring 96 issue (Page 2) asking "Do you have a Myasthenic child?" and in the Christmas 1996 issue there was a letter from a mother entitled "Congenital Myasthenia - can you help?" (Page 9).

What about the possibility of families with Myasthenic children meeting together to learn from one another and share experiences, perhaps as an annual event?

What is needed now is your feedback. Is there enough demand for such a meeting? Who should think about getting involved?

• Parents with all types of Myasthenic children, not just Congenital Myasthenics.
• Brothers, Sisters, etc., of a Myasthenic.
• Myasthenic teenagers and young adults who may be able to offer a fresh perspective on how to cope in today's hectic world

Let me give you a very simple example of a real problem that needs sound advice...

"Your child doesn't look that different to the other children in his class until he starts to tire physically. It can be a struggle to keep up with the others and he so wants to join in all the physical activities, yet he knows that no matter how much he tries he just can't. In a year's time he will move up to the Junior School. However, there is a place available at a special school which he can apply for, but this must be done NOW. Should he be kept in mainstream schooling and continue to suffer occasional taunts or should he go to the special school where he can develop at a much slower pace and gain confidence, but with the real worry that when it is time to leave at 16 he will be totally unprepared for the harsh world outside?"

These are the sort of questions that need input from older parents, young people in this very situation and young adults who can speak about it having lived through it. If families with Myasthenic children had a get-together such problems could be discussed and possibly new insights gained. Interested? Got a few ideas? If so please write to:

MGA NEWS February 1997

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