RE: [Myotubular_Myopathy] (unknown)
To dear Marie,
This was a real pleasure to watch - it was so lovely to see Una and Nathan and a little bit of his sister Kirsten in this interview and you must be so proud of them all. Una’s strength really shines out doesn’t it; it was such a beautiful and articulate interview and wonderful that the condition has been given so much focus on BBC. I wish your family well with the new care package and hope that Una and Nathan get the freedom they are seeking from it and that Nathan goes from strength to strength now with the extra help and care they will hopefully be receiving.
Nathan looks like he’s doing really well in this film too - which is so great to see! What a beautiful boy!!
Take care all of you.
Wendy Hughes - Parent Trustee
Myotubular Trust, 1113809
Founding Patron: Professor Victor Dubowitz, Emeritus Professor of Paediatrics, Imperial College London; President of World Muscle Society
Scientific Advisor: Professor Francesco Muntoni, Professor of Paediatric Neurology, Imperial College London
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From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of Marie Hanratty
Sent: 20 December 2009 09:49
To: eithne-gibbons@...; Myotubular_Myopathy@yahoogroups.com; ANNE MCALISTER; Caoimhe ONeill; Fedelmia & Gerry; sueramseymla@...; Fedelmia & Gerry; Frances Rogan; Gerdo; Hanratty Ciara CM EXECUTIVE SUPPORT; Jennifer; John & Catherine Major; keisu noble; lynda hanratty; Manus Hanratty; SAOIRSE McGLINCHEY; una nicholl; Veronica Hanna
Subject: [Myotubular_Myopathy] (unknown)