Thank you for visiting my fundraising page and let me introduce you to Max, the son of my dear friends Matt and Aliza who sadly died on 1^st March 2007 peacefully in his mother’s arms. 

Max was 7 months old and suffered from a rare genetic condition known as Epidermolysis Bullosa, it’s a condition where the skin breaks at the slightest touch, causing painful, open blisters and wounds. Max was unfortunate to have the junctional strain of this condition. Junctional EB is characterised by lack of adhesion of the skin through the basement membrane. Of all EB sufferers approximately 5% have junctional EB. Junctional EB is inherited recessively. 

The outlook of junctional EB is usually rather bleak; half of the children die within the first two years as the result of malnutrition and anaemia which are caused by serious blistering in the pharynx and the oesophagus. Characteristic clinical features are damage to and marking of the skin tissue on the face. These cutaneous defects only develop after a couple of months. There are only a few patients with this severe type that survive the second or third year of life.

Max’s body, arms, hands, legs and feet were constantly covered in horrendous blisters as a result of his condition and rarely healed. Blisters often occurred in his mouth and oesophagus, sometimes in and around his eyes. Matt and Aliza had to administer a combination of medicines everyday to reduce Max’s pain and suffering from the effects of EB. Max’s bandages and dressings were changed constantly to ensure his blister wounds did not become infected. These were some of the many daily tasks that Matt and Aliza faced during Max’s short life.

For most parents your first instinct to help a child in pain is to cuddle and reassure them. For Max’s parents this was near impossible as even a well-meant loving cuddle caused blistering. I have seen at first hand how EB affects a family and believe me it’s extremely upsetting. The thought of losing your first child to a genetic condition like EB is too much to bear, Matt and Aliza are now experiencing the worst feeling humanly possible, the cruel loss of their child!

Max was fighter by name and nature and defied all medical odds to live as long as he did, It’s testament to the extreme loving care provided by his parents who are both the most amazing people, I’ve never seen so much Love for a child as they have for Max; in his loving memory I am running this year’s London Marathon and hoping to be able to raise sponsorship to enable funding for research into his condition with the ultimate dream of finding a cure. Although this is too late for baby Max I am determined that everything possible should be done to ensure no one experiences what Matt and Aliza are going through.

If you can spare the time to look through the attached website you will find out more about the charity that I am trying to raise funds for.  Click on the "About EB and DebRA" tab on the left to read more stories about the lives of sufferers.

www.debra.org.uk

If you feel as moved as I do then you too can help. I know a lot of people would be extremely grateful if you are able to sponsor me online. If you prefer to send a cheque that too can be organised, just drop me an email and I will help you out.

Donating through this site is simple, fast and totally secure. It is also the most efficient way to sponsor me: DebRA will receive your money faster and, if you are a UK taxpayer, an extra 28% in tax will be added to your gift at no cost to you.

Thank you - together we can all make a difference,

Dan

Max William Boyle (24-7-2006 – 1-3-2007) we will never forget you, may you rest in peace and always be in our hearts.