Thought i'd do a PTR and let everyone know our story at the same time.
Our first child, a beautiful boy named Owen, was born in September 2006, to cut a very long story short we quickly knew that Owen was different, it was evident that he was very physically disabled and for the first 2.5 years of his life we searched for answers, many days and lots of tests at various different hospitals around the country led to nothing. Then in Feb 2009 we had the news that we dreaded, Owen has a terminal condition, it quickly sank in that we were going to lose the light of our lives.
Owen was diagnosed with Menkes disease, an extremely rare genetic, degenerative and progressive condition, his body doesn't transport copper around properly and this in turn leads to massive health problems, he has severe brain damage, lots of bladder problems, severe epilepsy and a whole host of other stuff. But despite all this he's a happy chappy.
We were told that Feb that Menkes children rarely see their 3rd birthday, Owen was 6 months from his 3rd birthday. We quickly got into gear and immediately said that we'll take him to Disney Paris, some great friends on the internet quickly raised a few thousand pounds and we booked for just after his 3rd birthday that year. Owen had the most magical time.
He carried on pretty good after that well into the following year so we decided to book again for September 2010, a bit risky as he had suffered 2 bouts of pneumonia earlier in the year but come September he was raring to go and we all had a great time again. But disaster struck a couple of weeks after returning home when he was hospitalised with real bad pneumonia, this time it was very very serious and he spent a month on a life support machine, I honestly thought we would lose him but he battled back like the fighter he is and was home in time for Christmas.
We had decided by now that Owen loves Disney so much and he would just love a trip to Florida, we had massive help through Make A Wish who arranged everything and literally sorted everything down to the last detail, we went to Florida last March and Owen loved it, despite his obvious disability and condition we never have in our minds that he can't do certain things, the word 'no' doesn't exist, some people thought we were mad to take him all that way but they can now see how good it was for him.
We are now booked to go to DLP this June, previously we stayed at the DLH both times and thought we would have a change this time so we are booked into the Seqioua Lodge, looks very nice indeed and we all can't wait! Especially Owen.
So as you can see Owen really is the most special little boy in the world, and after that dark day in Feb 2009 we never thought we would be going to DLP for a 3rd time let alone having taken Owen to Florida.
I must add that we also have a daughter, Olivia was born in 2008, we were actually very very lucky that she turned out to be a girl for this reason, Owen's condition it turns out is inherited, it turns out my wife has the faulty gene responsible for Menkes, now it only really affects boys because boys only have 1 copy of the gene yet girls have 2 copies, so usually if a female has it then she is a carrier and has 1 faulty gene and a good copy also which takes over, but the faulty gene is also passed down, when we had Olivia we knew nothing of this as Owen hadn't had his diagnosis then and if we had another boy then the chance of Menkes occuring again is 1 in 2 so we are lucky that we had a little girl.
Anyway, enough of my rambling on, you're all probably bored after reading through this lot!!
Roll on June!
Our first child, a beautiful boy named Owen, was born in September 2006, to cut a very long story short we quickly knew that Owen was different, it was evident that he was very physically disabled and for the first 2.5 years of his life we searched for answers, many days and lots of tests at various different hospitals around the country led to nothing. Then in Feb 2009 we had the news that we dreaded, Owen has a terminal condition, it quickly sank in that we were going to lose the light of our lives.
Owen was diagnosed with Menkes disease, an extremely rare genetic, degenerative and progressive condition, his body doesn't transport copper around properly and this in turn leads to massive health problems, he has severe brain damage, lots of bladder problems, severe epilepsy and a whole host of other stuff. But despite all this he's a happy chappy.
We were told that Feb that Menkes children rarely see their 3rd birthday, Owen was 6 months from his 3rd birthday. We quickly got into gear and immediately said that we'll take him to Disney Paris, some great friends on the internet quickly raised a few thousand pounds and we booked for just after his 3rd birthday that year. Owen had the most magical time.
He carried on pretty good after that well into the following year so we decided to book again for September 2010, a bit risky as he had suffered 2 bouts of pneumonia earlier in the year but come September he was raring to go and we all had a great time again. But disaster struck a couple of weeks after returning home when he was hospitalised with real bad pneumonia, this time it was very very serious and he spent a month on a life support machine, I honestly thought we would lose him but he battled back like the fighter he is and was home in time for Christmas.
We had decided by now that Owen loves Disney so much and he would just love a trip to Florida, we had massive help through Make A Wish who arranged everything and literally sorted everything down to the last detail, we went to Florida last March and Owen loved it, despite his obvious disability and condition we never have in our minds that he can't do certain things, the word 'no' doesn't exist, some people thought we were mad to take him all that way but they can now see how good it was for him.
We are now booked to go to DLP this June, previously we stayed at the DLH both times and thought we would have a change this time so we are booked into the Seqioua Lodge, looks very nice indeed and we all can't wait! Especially Owen.
So as you can see Owen really is the most special little boy in the world, and after that dark day in Feb 2009 we never thought we would be going to DLP for a 3rd time let alone having taken Owen to Florida.
I must add that we also have a daughter, Olivia was born in 2008, we were actually very very lucky that she turned out to be a girl for this reason, Owen's condition it turns out is inherited, it turns out my wife has the faulty gene responsible for Menkes, now it only really affects boys because boys only have 1 copy of the gene yet girls have 2 copies, so usually if a female has it then she is a carrier and has 1 faulty gene and a good copy also which takes over, but the faulty gene is also passed down, when we had Olivia we knew nothing of this as Owen hadn't had his diagnosis then and if we had another boy then the chance of Menkes occuring again is 1 in 2 so we are lucky that we had a little girl.
Anyway, enough of my rambling on, you're all probably bored after reading through this lot!!
Roll on June!
it sounds like this special little boy has very special parents too. I hope you have yet another magical trip. 
