You know the saying ' one in a million' well our Oliver really is one in a million (times 2). 

Oliver has Muckle Wells Syndrome, a rare degenerate disease which affects 1 in a million people.  It can affect all of his organs and joints, and there is a high possibility he will go deaf in adolesence.  Doctors are already investigating the beginning of kidney damage.  He also has a rare eye condition, which affects 1 in a million people.  His quality of life in the future is unknown.  Here's his story.

Oliver,  our elder son was born on the 6th February 2007.  Like any parents we were delighted with our little bundle of joy. He was only one day old when we noticed he was covered in a red rash but this was put down to a reaction to his first bath.  The rash was present on a daily basis and moved around his body but we were assured this was nothing to worry about.

The rash continued to be present and when Oliver was about 2 years old he was diagnosed as having acute idiopathic urticaria - which basically means a rash with no obvious cause, but we were assured that it would burn itself out in 6 months.  It didn't.

Life continued as normally as possible, with Oliver having disturbed sleeping patterns whilst his unsightly rash was still present on a daily basis.  We continually had to reassure other parents about his rash as they were cautious about their children being in his presence in case he had something contagious.

Through time we thought Oliver had learned to accept his 'spots' and often referred to him as our special spotty little man.  However when he was 4 years old we were shocked to find that he had coloured his feet in yellow in an attempt to cover the spots and at one stage had even attempted to cut his spots off with scissors! 

On another occasion he told us he didn't like to look in the mirror as he didn't look nice, like the other boys and girls in his class.  It was heart breaking.  We were at a loss as to what to do, but we knew we had to do something.  

We continued to attend numerous doctor appointments and had to recount his history at every appointment. We even took him to private consultations in a quest to get some answers.

Finally, when Oliver was 5 years old we attended an appointment with a local dermatologist who was the first to be fully aware of Oliver's case history. Unbeknown to us he had his suspicions as to Oliver's condition and was making discreet enquiries with other specialists.

On Wednesday 20th April 2011 at 4.55pm we were devastated to hear that Oliver was suspected of having Muckle Wells Syndrome (MWS). We spent an agonising two weeks over the Easter holidays surfing the internet, researching this condition.  Each website we read seemed to paint a bleak picture of what the future would hold for Oliver.  MWS affects about 1 person in a million, it can affect every organ and all the joints in the body and there is a high possibility of going deaf in adolescence.

As there were no other cases of MWS  in N. Ireland we decided to take Oliver to the specialists in England.  After numerous letters, phone calls, faxes and emails we finally got an appointment with Great Ormond Street Hospital (GOSH).  On arrival at this appointment the consultant couldn't understand how we had obtained the appointment; he said "you are in the right place but you've come in the back door". Our persistence paid off.

The build up to our first appointment in GOSH was a very anxious and stressful experience, but despite the bad news all the staff were welcoming, supporting us and putting us at ease, reassuring us that Oliver was in the best hands.  Oliver however, had a completely different take on this trip - being thoroughly excited about going to London on 'holidays' at the same time as the 2010 Olympics.

Slowly the pieces started to come together - Oliver's continuous complaints of sore limbs, nightly fevers, unexplained crying episodes,  low energy levels and lethargy.  (At sports day in P1 Oliver had just got off the starting line when the other children were crossing the finish line).  We had explained all these symptoms away as growing pains; an innocent rash; and believing that Oliver was a sweaty child who was just more subdued and quiet than other children.

Test results showed Oliver was suffering severe symptoms with worryingly high levels of certain proteins in his blood, and that he has a rare form of MWS.

Oliver went through a year of daily injections which were extremely painful and it was always a struggle to administer.  Some mornings it took up to 40 minutes to inject Oliver with 2 of us holding him down!  He attended counselling but due to his young age it was hard for him to understand that the pain was for his own good.  

Once again the doctors shone through for us as earlier this year when they managed to get Oliver transferred on to an 8 weekly drug, the same as the other children in England use.

Oliver is currently involved in cutting edge medical research as his future is uncertain.  He has to be constantly monitored and has to be 'quarantined' from known sickness.  He was unable to visit his grandparents and cousins for 6 weeks before Christmas as chicken pox was doing the rounds in their households.  Oliver even had to be moved out of our home for 4 days earlier this year as his brother had scarlet fever.

As a family we've been through a tough time over the past few years.  However, we are well aware that there are others out there who have more to contend with than us.  We would like to give something back and have decided to raise money for Great Ormond Street so they can be there for other families.

So now we need your help!! We would like to raise £5,000 (Oliver picked this target as he was 5 when he was diagnosed!).   

Oliver's great uncle is doing a sponsored gliding challenge and we are holding a family fun day and BBQ on Saturday 2nd August 2014 from 1-5pm in Killaig Church Hall, Coleraine, BT51 4NP.

Please help us if you can.. no matter how small a donation... It all adds up! Please help Great Ormond Street work their 'magic' and give children like Oliver a better quality of life.

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