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On October 31st 2010 i will be entering the Worksop Half Marathon, in memory of my Nephew Henry, who passed away on January 7^th 2010 of a rare genetic condition called Alpers Disease. Alpers Disease affects around 1 in 200,000 children in the and is a Mitochondrial Disease. There are many Mitochondrial Diseases ranging from the mild to the more severe, many of which can be fatal, there is no known cure for these diseases. Henry bas born on October 6^th 2007 and seemed to be a normal baby, he developed fine for around the first year or so, he started to walk and was trying to talk and we thought everything was fine. Then Henry started to develop mild symptoms including Nystagmus, seizures, speech and walking delays. Although to look at Henry you wouldn’t have known. After many visits to hospital the doctors couldn’t piece all of Henrys symptoms together, due to his seizures Henry was wrongly diagnosed Epileptic in September 2009 and prescribed Sodium Valproate.  We thought Sodium Valprotate was the wonder cure that we had been looking for, Henry immediately improved, the seizures stopped and Henry seemed to be so much happier. After a few months Henry started to deteriorate, several visits to hospital followed and finally Henry was admitted to Peterborough District Hospital December 9th 2009 suffering from liver problems, the doctors there couldn’t piece all Henrys symptoms together, Henry was transferred to Kings College Hospital London on December 12^th 2009 where they immediately identified his condition by piecing all the symptoms together, they also did tests to back this up, Henrys symptoms got worse and worse, he battled for over a month but sadly passed away from multiple organ failure on January 7^th 2010. In April 2010 the results from all the tests on Henry came back positive for Alpers Disease. The doctors at Kings said that the Sodium Valproate should not be prescribed to people suffering from Mitochondrial diseases as it is known to cause liver problems therefore the medicine almost definitely unmasked the Alpers disease. We don’t know how long Henry would have lived without being prescribed Sodium Valproate. Alpers disease is so unpredictable that Henry could have lived for several years but deteriorated slowly or at any time something as simple as a virus could have unmasked the disease in a similar way to the Sodium Valproate.

Mitochondria exist in nearly every cell in the human body & they are the powerhouse for the cells & therefore for life. If the Mitochondria are weakened due to a mitochondrial disease they cannot produce the energy needed for the body to function properly. Very little was known about Mitochondrial Diseases until fairly recently. In fact as little as five years ago Henry may not have had a confirmed diagnosis.

There is much research in to Mitochondrial diseases, one of the main centres being Newcastle University biomedicine Research Group where there was a recent breakthrough in genetics involving fertility treatment replacing faulty Mitochondria with good Mitochondria.

 

I am raising money for Newcastle University and their research into treatments and methods in preventing Mitochondrial Diseases.

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