Joas lives in The Netherlands. Straight after his birth in July 2006, he developed breathing problems and was brought to a hospital...
On Saturday the 11th of May the group of cyclists arrived home after a very special week. The group cycled over 325 miles in 5 days and visited all the 5 MSS-families living in the UK. The cyclists got a warm welcome from all the families and is was very special and emotional to meet each other and sharing experiences.
The group cycled 80-100 miles a day and the many hills made the tour tough and the days long.
MSS families worldwide join together to fight for the same purpose: to give their child with the Marshall-Smith syndrome (MSS) a better life.
MSS is a rare and serious syndrome. Many MSS children die in early childhood from severe respiratory problems. They all have an accelerated bone aging, mental retardation and often eye / ear problems. The problems can vary from patient to patient, but the children with MSS have one thing in common: a very cheerful zest for life!
In connection with all joint families worldwide the MSS Research Foundation organizes contact with fellow sufferers, initiatiates medical research and works on standards of care. All activities are dedicated to improving the quality of life.
Join us and help these beautiful kids!
traducido por Google Traductor.
Síndrome de Marshall-Smith es una condición de participación de la niñez específicas características faciales, la maduración ósea que se avanza la edad del individuo, falta de crecimiento y aumento de peso apropiado para la edad del individuo, y severo respiratorio (respiración) problemas.
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