Daddy's Marathon for Joshua's Memory

Flora London Marathon 2007 · 22 April 2007 ·
JOSHUA ZACHARY BOLTON
4th September 2004 – 1st April 2006
Thank you for visiting my ‘justgiving’ fundraising page which is memory of my wonderful little boy Joshua, who died very suddenly & unexpectedly on the 1st April 2006.
Losing Joshua as suddenly as we did, has been the most devastating & unbearable time of our lives, and just getting through each day since his death has been so difficult to endure.
Just after Joshua died, I watch the London Marathon on the TV & was so moved by the personal stories told, that I decided then, that I was going to run the 2007 London Marathon, in memory of my little boy & in aid of his charity Climb - Children Living with Inherited Metabolic Diseases www.climb.org.uk, who have supported my wife, Pauline & I throughout this time and helped give us some solace to our obvious question of WHY?
Joshua’s Condition
Since Joshua’s death, it has been found that he had inherited a genetic metabolic disorder called MCADD – Medium Chain Acyl-CoA Dehydrogenase Deficiency. This disorder belongs to a group of inherited autosomal recessive disorders called ‘Fatty Acid Oxidation Disorders (FODs).’
“Fatty Oxidation Disorders (FODs) are genetic metabolic deficiencies in which the body is unable to oxidize (breakdown) fatty acids to make energy because an enzyme is either missing or not working correctly. The main source of energy for the body is a sugar called glucose. Normally when the glucose runs out, fat is broken down into energy. However, that energy is not readily available to children and adults with an FOD. If undiagnosed and untreated, these disorders can lead to serious complications affecting the liver, heart, eyes and general muscle development, and possibly death.” www.fodsupport.org/fods-defined.htm
“Patients with MCAD deficiency are healthy most of the time. Infections or prolonged fasting, however, can lead to drowsiness and coma or sudden death. This can be prevented by avoiding fasting and maintaining a regular intake of sugar during infections - by mouth or intravenously if the child vomits. With this simple management, outcomes are excellent.” www.cafamily.org.uk
The most difficult thing we have struggled to come to terms with, is that this disorder is easily treatable if diagnosed. MCADD is only a problem for children / people if they become ill and are unable to keep food down, if so, the treatment is to give glucose intravenously for that period.
Diagnosis for MCADD can be incorporated into the current newborn screening Guthrie (heel prick) test; however MCADD testing is still only at the pilot stage at present in the . Since the pilot began in April 2004, so far, half the new born population in the have been tested & from these results between 4 to 5 babies per month are found to have MCADD. What makes it unbearable to comprehend, is that Joshua’s death could have been prevented had this screening pilot been available in the area that we live.
In April 2007, the month of the London Marathon, the MCADD pilot will come to the end and it will be then down to our Government to decide whether to allow for MCADD testing to be incorporated into the current national newborn Guthrie (heel prick) screening tests.
Joshua’s charity Climb are pushing the Government to bring this screening into place for all newborn babies in the UK, and that is why I am running the London Marathon to support Climb in their mission, therefore preventing other parents the despair of losing a child to MCADD unnecessarily, as we have had to endure with losing our little boy Joshua.
Climb - Children Living with Inherited Metabolic Diseases www.climb.org.uk
‘Meeting the Challenge of Metabolic Disease Every Step of the Way’
Climb are committed to fighting metabolic diseases through research, awareness and support. They are the 's only dedicated organisation to provide information and support on all metabolic diseases to children, adults, families, carers and professionals. Climb supports over 4000 families throughout the and Europe & Worldwide this support extends to over 6000 families and support groups.
Climb is a national umbrella organisation working on behalf of children, young people and families affected by metabolic diseases & supports over 700 different metabolic diseases.
About our Little Boy – Joshua’s Galaxy Tribute Fund
Galaxy Tribute Fund
"Perhaps they are not the stars.
But rather openings in the heavens where the love of our lost ones pours through
And shines down upon us to let us know they are happy.’
Inspired by an Eskimo legend.
www.climb.org.uk Galaxy Tribute Funds
During this year since we lost Joshua, Climb have been there for Pauline & I for help and support which we struggled to find from other support networks. What has helped us come to terms with our little boy’s death is Climb’s Galaxy Tribute Fund’, which gave us some purpose in life during this devastating time. With help from family & friends, we have managed to keep Joshua’s memory alive by having a ‘star’ in the Andromeda Galaxy named after him.
If you have time, please visit http://www.climb.org.uk/Galaxy/tribute/JoshuaBolton.htm
to read our little boy Joshua’s Galaxy Tribute story. (Or via www.climb.org.uk & click on Galaxy Tribute Funds.)
Donating through the ‘Justgiving’ Website
Donating through this ‘Justgiving’ site is simple, fast and totally secure. It is also the most efficient way to donate: Climb will receive your money electronically, and if you are a taxpayer, an extra 28% in Gift Aid will be added to your donation at no cost to you.
If you have any problems donating you can call this number for help on 0845 021 2110.
Thank you for sparing the time to read my ‘justgiving fundraising page’ and an even bigger thank you for your kind gift if you have sponsored me for the
2007 London Marathon .
You have helped Climb to make MCADD screening a reality for all newborn babies in the and save a baby’s life.
Many thanks
Love & best wishes
Neil Bolton
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