Emmet Jacob Schaare Born: 21/4/2007 (7 years old) We have always known Emmet was special, from an early age he has always commanded the centre of attention. He really is a magical little man. The end of last year we were approached from his school’s OTRS over concerns he was not reaching all of his physical development markers, for example he couldn’t hop on one leg without losing balance etc... After a series of blood test there were concerns he may have Muscular Dystrophy. It’s about now we start feeling the full weight of the problem but we remain optimistic. After seeing pediatric specialists they confirm the worst possible news he has Duchene Muscular Dystrophy the most severe form. Not cool. What does this mean for Him? The outlook is poor...His muscles are breaking down into scar tissues because of his bodies inability to produce dystrophin, a critical muscle cell protein. It affects every muscle in his body including his heart and the muscles that work his lungs. He will slowly lose strength right across his body. Sometime between 10-12years old he will need to be using a wheel chair full time. He will not be able to dress himself. Eventual he will not be able to eat solid food or breathe by himself. The average life expectancy is 18 years old, although through huge advances in modern medicine some patience’s are surviving into their late twenties early thirties. Nobody can say how fast he will deteriorate and everyone is slightly different. Currently there is no cure. As you can imagine this is truly heart breaking. We are a typical Kiwi family of four, Dad (Sandy), Mum (Penni) and Marshall, Emmet’s older Brother (11). We are an active family with a love of the outdoors. Emmet especially loves the beach. Emmet is surrounded by people who love him and It is our goal to make the most of things while Emmet is still able and to give him a full exciting life. Not many people have even heard of DMD or have just heard of it in passing...I hope this post will raise some awareness of this terrible condition. Feel free to check out these pages; Joining Jack The Muscular Dystrophy Association of NZ
Posted on: Mon, 25 Aug 2014 00:38:35 +0000