Hi folks, time to share our story so far so here goes.
Our first child, Owen was born in September 2006, he is just the most perfect little boy in the world! pregnancy and birth were textbook and all was well for a few months, as time went on it was very clear that Owen wasn't getting to where he should be at the right times in his development. After his 1st birthday he was refered for an MRI scan which showed alot of brain damage amongst other things, this now explained most things but still it wasn't a proper diagnosis of the root cause of things. Time goes by and we fleet from hospital to hospital and Owen goes through a whole host of tests, still no clear diagnosis.
In August 2008 our daughter, Olivia was born, the most beautiful little girl in the whole world! Now we have a complete little family!
We head into 2009 and yet more testing for Owen, its very plain to see now he is severely disabled and needs lots of special equipement (wheelchair, feeding pumps etc), they cant seem to figure things out so the doctors start genetic testing at a deeper level than before, this reveals all.
In late Feb 09 we get the worst news in the world, Owen has a final diagnosis of a condition called Menkes disease, we knew Owen has severe disablities but this news literally hit us like a freight train, it was just awful knowing that the light of our lives had this terrible incurable condition and wouldn't live very long, 90% of children with the condition dont make it past 3 years of age. The condition is a genetic progressive degenerative disorder that affects the gene responsible for carrying copper around the bodd, it overloads major organs with too much copper and starves areas (ie the brain) which causes the massive brain damage. The condition only affects boys which meant Olivia is just fine.
In March some friends on an internet forum raised some money to send us all to Disneyland Paris which we did last September, it was just the most magical time and Owen loved it, it was touch and go as to wether we would make it as he had been in and out of hospital all summer and he only got discharged the day before we went! Since the Disney Paris trip he has been on top form, staying out of hospital, although he had a major bladder operation in Feb and managed to get pneumonia last month but got over it pretty quickly.
Having been refered to Make A Wish we decided Owen would love to go to Florida to Disneyworld, they obliged and we are going in December (6th to 13th), we are staying at Give Kids The World which Owen and Olivia will absolutely love, we couldn't have asked for a better place to be staying.
Any ideas or tips for us would be great, especially to keep Olivia amused on the 10 hour flight as we are based in England, not looking forward to driving out there as we drive on the other side over here!!
Our first child, Owen was born in September 2006, he is just the most perfect little boy in the world! pregnancy and birth were textbook and all was well for a few months, as time went on it was very clear that Owen wasn't getting to where he should be at the right times in his development. After his 1st birthday he was refered for an MRI scan which showed alot of brain damage amongst other things, this now explained most things but still it wasn't a proper diagnosis of the root cause of things. Time goes by and we fleet from hospital to hospital and Owen goes through a whole host of tests, still no clear diagnosis.
In August 2008 our daughter, Olivia was born, the most beautiful little girl in the whole world! Now we have a complete little family!
We head into 2009 and yet more testing for Owen, its very plain to see now he is severely disabled and needs lots of special equipement (wheelchair, feeding pumps etc), they cant seem to figure things out so the doctors start genetic testing at a deeper level than before, this reveals all.
In late Feb 09 we get the worst news in the world, Owen has a final diagnosis of a condition called Menkes disease, we knew Owen has severe disablities but this news literally hit us like a freight train, it was just awful knowing that the light of our lives had this terrible incurable condition and wouldn't live very long, 90% of children with the condition dont make it past 3 years of age. The condition is a genetic progressive degenerative disorder that affects the gene responsible for carrying copper around the bodd, it overloads major organs with too much copper and starves areas (ie the brain) which causes the massive brain damage. The condition only affects boys which meant Olivia is just fine.
In March some friends on an internet forum raised some money to send us all to Disneyland Paris which we did last September, it was just the most magical time and Owen loved it, it was touch and go as to wether we would make it as he had been in and out of hospital all summer and he only got discharged the day before we went! Since the Disney Paris trip he has been on top form, staying out of hospital, although he had a major bladder operation in Feb and managed to get pneumonia last month but got over it pretty quickly.
Having been refered to Make A Wish we decided Owen would love to go to Florida to Disneyworld, they obliged and we are going in December (6th to 13th), we are staying at Give Kids The World which Owen and Olivia will absolutely love, we couldn't have asked for a better place to be staying.
Any ideas or tips for us would be great, especially to keep Olivia amused on the 10 hour flight as we are based in England, not looking forward to driving out there as we drive on the other side over here!!
god help all the other passengers! she will terrorize them! Owen should be ok, i'm sure he'll just chill in the special seat and probably sleep most of the time.
