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For many years we believed that 2 of our 3 boys had Autism & ADHD. It was only when our youngest son enrolled in an Autism research study which included a brain MRI scan that we found out the devastating truth.

In April last year we received a phone call from our GP. They had received  a letter saying we needed an urgent referral as our sons recent scan showed an abnormality to the white matter of his brain. Our first thought was cancer but we were informed that the pattern of damage was consistent with a rare genetic disease called X-Linked Cerebal Adrenoleukodystropy (ALD).

We were referred to the Inherited Metabolic diseases team at the Evelina hospital in London where we were told that our other sons each had a 50/50 chance of having inherited the same condition. After tests we found out that all 3 of our boys had the rare disease.

The disease had already caused varying amounts of damage to the central nervous systems of each of the boys brains and within the space of a few years would eventually leave each of them in a vegetative state. 

The only option available to us was for the boys to have a bone marrow transplant, this could not repair the damage already done but would hopefully halt the progress of the disease. Boys going through the procedure have a 10% chance of death due to complications and the treatment can cause the disease to progress more rapidly before eventually halting it.

In July 2013 our youngest 2 boys were admitted to adjoining isolation units at Great Ormond Street hospital. It was the first time two siblings had undergone bone marrow transplants simultaneously.

Thankfully our middle son went through the transplant procedure without too many complications and came home after 8 weeks, unfortunately things didn't go so smoothly with our youngest. After becoming ill with a virus the first transplant failed, meaning he had go through another round of intensive chemotherapy and total body irradiation. As he was recovering from the second transplant he got very ill with acute pancreatitis and it was only the superb treatment he received from the intensive care team that saved him. 

After 5 long months of being in isolation our brave boy was finally allowed home in time to start the new year at home with us. Things are still not easy for him and he has got lots of problems including Chronic GVHD of his skin and eyes (a complication of the transplant where the donors cells see the body's own cells as foreign and attack them). Because of this he is still very heavily immunosuppressed and is not allowed to go out in busy places, he also relies on a wheelchair at times as he can't walk very far. 

In June this year (2014) the boys underwent MRI scans to ascertain the status of the disease. Although there has been some progression it looks as though it has been slower than anticipated. It is now a matter of waiting for the transplant to take effect and hopefully stop the active disease before they lose more brain function.

In regards to our eldest we don't know what the future holds for him. As his condition is more advanced than his brothers a bone marrow transplant is probably too dangerous and is unlikely to work without advancing the disease at a rapid pace. We are currently using an experimental cocktail of over the counter supplements which we hope will slow the progress of the disease but it is only through future research that we may be able to help him and others in his position.

Our boys have been so brave and have gone through so much. It has been an emotional roller coaster for our family and we can't believe how much has happened in just over a year, but we are luckier than most as we could have lost all 3 of our beautiful sons if the disease had been discovered later than it was.

We had never heard of this disease before which is why we are now trying to raise money for ALD Life. This charity funds research into this terrible disease and helps by providing grants to families affected by this condition. Please help raise awareness of this disease and if you can spare any money please donate to help this charities worthwhile cause.

9/7/15 Update

Just to let everyone know there has still been no progression of the disease regarding our eldest son, which is great news. he just has to have 6 monthly MRI's and fingers crossed it stays that way.

With regards to our youngest, he is still at home with us so has missed 2 years of being at school due to his non existent immune system. We hope to get him in to a specialist school before this Christmas as he is slowly recovering. 

Due to the steroids he now has Osteoporosis and has 10 vertebrae fractures of his spine. This has resulted in him suffering severe pain and having to wear a back brace. He did have a weekend back in GOSH for medication to try and help the Osteoporosis but he suffered an acute reaction resulting in hospital visits for the following 5 days to try and get it under control. Generally he is in very good spirits even though he is unable to do very much. This is due to him knowing that after 2 years his Hickman line will soon be coming out.

Our middle son is doing well, even though very tired every day. He is back at school full time, and has been given extra time to complete his GCSE exams this and next year.

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