***New Update 20th July 2011***
Alfies Uncle Will and his friend Mark Little will be running the Chippenham Half Marathon on 11th September 2011 to raise money for Newcastle University to help fund the vital research they carry out to learn more about illness that took Alfie and so many others.
When you donante via this page please start your donation with either Will or Mark to help us track our fundraising.
We knew Alfie was chronically sick. He had Complex lll Deficiency of the Mitochondrial Respiratory Chain. We always knew that there was no cure or magic medicine, that Alfie would never get better and that he would never reach adulthood. Knowing this didnt make our pain any more bearable on the day we lost our angel.
On Tuesday 5th Jan 2010 Alfie suffered cardiac arrest and respiratory failure. Alfie's heart stopped beating in the ambulance on the way to the hospital. It didnt beat again for an hour. As a result of this, Alfie suffered severe brain damage. On Friday the 8th January, doctors carried out a Brain Stem test, which Alfie failed twice. They gave us the devasting news that they were under no obligation to continue to keep Alfie on life support as his brain had died. He was just 2 years old. My brave little boy lost his fight against Mitochondrial disease on 8th January 2010 at 12.18pm with his mummy and daddy by his side.
So brave, so small and so beautiful, full of hope and promise. Alfie taught us to love, to hope beyond expectation and to trust in the unknown. We didnt know what pain was til the day Alfie went to heaven. That pain will never go away and our hearts will always be emptier. He gave us strength that we never knew we had and blessed our lives with happiness.
Alfie was without a doubt, a true angel on earth and our bond will never be broken.
Mitochondrial diseases result from failures of the mitochondria. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person this is happening to is severely compromised.
Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems. Alfie suffered with muscle weakness and pain, feeding, swallowing and respiratory difficulties, chronic sickness, development delays, hearing difficulties and susceptibility to infection.
Living with Complex lll Deficiency was heartbreaking. Alfie had good days and bad days. He didnt have the energy to crawl and walk and at times cannot find the energy to hold his head up, eat and play with his toys. Catching a common cold would cause Alfie to have respiratory failure and he has spent many weeks fighting for his life on a ventilator. Its not fair that children suffer and die from this disease.
Together we can make a difference. Please donate towards finding a cure so that one day other children like Alfie dont have to suffer the way he did.
