I don’t know if you are aware of this or are on Facebook but I know of a closed member group called Positive Mums for Negative Merosin Kids. It might be something you want to check out?
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
The Care and Support Team at MDUK can put you in touch with another mum who has a daughter with this condition if you like? They are part of our peer support network.
If this might be something you’re interested in or you’d like more information please do email me on m.rees@musculardystrophyuk.org
This website uses cookies to give you the best, most relevant experience. You consent to our cookies if you continue to use our website. You can read more in our cookie policy.