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Thursday, November 25, 2010
So what is that strange shadow in the background?
If you read my first post you may have noticed that we do have two children. You have met George and even heard about parts of his life, but who is his sibling and can you even remember if this sibling is a he or a she?
It is so easy to get consumed in the whole drama of a potentially life threatening disease that we often tend to look past the people and the daily life happenings which are clouded in the mists making up the peripheral backdrop to what we have focused our attention on. As I had mentioned in a previous post we had embarked on a fund raising drive which had George as the focal point. Everywhere we went people would ask "How is George?" or comment "he seems to be doing very well".Seldom did anyone ask "How is Kelley?" Yes finally you meet her! I have a beautiful daughter named Kelley, just twenty three months younger than George and not affected by this cruel disease. Well that is not true. Kelley is indeed affected by the disease. To a large extent Kelley has had to grow up in a very large shadow. No one should have to go through life with a disease as cruel as what George has, but if the truth be told our whole family suffer from this disease. As parents it is heartbreaking to watch George loose his ability to walk, talk, speak and eat. It is just as heartbreaking to see Kelley lost in the everyday emotional storms. I am very proud of Kelley, she is a strong, level headed young woman who is growing up under extremely challenging conditions.
We all get a bag of salt to carry through life and sometimes we like to think that our bag of salt is so much heavier than anyone else's and at that point it feels like we cannot carry the bag even one step further. If you are someone who finds him / herself ready to drop your bag of salt because it is so heavy then I have some pretty rough advice for you! Tighten your grip on life, hold onto your bag of salt and take the next step. If you need to, go to your room close the door and have a dam good cry. When you are finished wipe your eyes wash your face stand up straight and pick up your bag of salt because without it you will never be "the salt of the earth". Life is a tough horse to ride but Kelley has a good grip on the reigns and she is well seated in the saddle. The best part of any day is early morning. The night may be long and dark but the sun will rise again and it will be worth being there for it.
It is so easy to get consumed in the whole drama of a potentially life threatening disease that we often tend to look past the people and the daily life happenings which are clouded in the mists making up the peripheral backdrop to what we have focused our attention on. As I had mentioned in a previous post we had embarked on a fund raising drive which had George as the focal point. Everywhere we went people would ask "How is George?" or comment "he seems to be doing very well".Seldom did anyone ask "How is Kelley?" Yes finally you meet her! I have a beautiful daughter named Kelley, just twenty three months younger than George and not affected by this cruel disease. Well that is not true. Kelley is indeed affected by the disease. To a large extent Kelley has had to grow up in a very large shadow. No one should have to go through life with a disease as cruel as what George has, but if the truth be told our whole family suffer from this disease. As parents it is heartbreaking to watch George loose his ability to walk, talk, speak and eat. It is just as heartbreaking to see Kelley lost in the everyday emotional storms. I am very proud of Kelley, she is a strong, level headed young woman who is growing up under extremely challenging conditions.
We all get a bag of salt to carry through life and sometimes we like to think that our bag of salt is so much heavier than anyone else's and at that point it feels like we cannot carry the bag even one step further. If you are someone who finds him / herself ready to drop your bag of salt because it is so heavy then I have some pretty rough advice for you! Tighten your grip on life, hold onto your bag of salt and take the next step. If you need to, go to your room close the door and have a dam good cry. When you are finished wipe your eyes wash your face stand up straight and pick up your bag of salt because without it you will never be "the salt of the earth". Life is a tough horse to ride but Kelley has a good grip on the reigns and she is well seated in the saddle. The best part of any day is early morning. The night may be long and dark but the sun will rise again and it will be worth being there for it.
Sunday, November 14, 2010
Lost in the hay stack.
A trip to America was a daunting idea. Not only had We never been outside the country, but the cost of such a trip was immense. We are not a wealthy family, don't get me wrong, we have enough to get by on but a trip to America was out of our means. We decided to approach the local Round table service club to see if they could assist in anyway. A huge fund raising project was launched in order to try raise enough for the trip over to America.
Suddenly we were public domain, both from a negative and positive point of view. Response to the fund raising was phenomenal, people opened their hearts to our plight and the money started coming in, while other people would peer into our shopping trolley to make sure we only bought the cheapest brand of product available. Within only three months enough funds had been raised to cover the cost of our trip to America and in June of 1997 we arrived at Johns Hopkins hospital in Baltimore. This was the only centre concentrating on AT in the world at that stage. After lots of blood tests, physical testing and prodding and consulting we were given a diagnosis.
"We are not sure what your son has" came the answer. It seems that George's alpha pheta protein level was not raised enough in order to conclusively diagnose AT but that his movements, drooling and speech all indicated AT. Also the young age at which this disease presents was also in favour of the AT diagnosis. In simple terms let me explain the name of the disease. "Ataxia" means to be un-co-ordinated while Telangiektasia refers to faint red blood vessels which appear on the soft skin behind the ears, around the eyes and on the cheeks. These lines generally become visible from the age of 9 or 10 years of age. At this point I must tell you that the AT clinic at Johns Hopkins was very well co-ordinated and all the staff were very professional.
Home was the next stop, to carry on life with the huge amount of medical info we had been armed with. This info has been vital to us over the years and we draw on it daily even now nor than 14 years down the line. There is however always something which can not be planned for. Those of you who are lucky enough to have children who are in their teens will know that adolescence is a huge challenge for anyone. Now try hooking that up to a teenager who's only ambitions are to go out and be as wild as he is supposed to - but does not have the physical ability to keep up with his peers. What do you end up with? - AAAAARGH!
George is now 16 years old, his movements have become very unco-ordinated and he needs to have help balancing. He uses an electric chair to get around outside. What does he want most? The same as any 16 year old hot blooded male. Long legs, blond flowing hair and a decent size chest all tucked into a mini skirt. Getting the picture?
The red lines have never appeared so in June 2009 we saw a neurologist who cast doubt on the diagnosis of AT. We had an MRI of George's brain done and the atrophy of the brain so far is not consistent with that of AT, so now we have a diagnosis of "Spino Cerebelar Degeneration". The problem is that this diagnosis is very broad and incorporates a wide spectrum of different ataxia's, each with slightly different problems.
This diagnosis had a bad effect on all of us as we felt that we no longer had a specific name for the disease. George went into the worst depression he ever experienced. We were all so very lost!
Suddenly we were public domain, both from a negative and positive point of view. Response to the fund raising was phenomenal, people opened their hearts to our plight and the money started coming in, while other people would peer into our shopping trolley to make sure we only bought the cheapest brand of product available. Within only three months enough funds had been raised to cover the cost of our trip to America and in June of 1997 we arrived at Johns Hopkins hospital in Baltimore. This was the only centre concentrating on AT in the world at that stage. After lots of blood tests, physical testing and prodding and consulting we were given a diagnosis.
"We are not sure what your son has" came the answer. It seems that George's alpha pheta protein level was not raised enough in order to conclusively diagnose AT but that his movements, drooling and speech all indicated AT. Also the young age at which this disease presents was also in favour of the AT diagnosis. In simple terms let me explain the name of the disease. "Ataxia" means to be un-co-ordinated while Telangiektasia refers to faint red blood vessels which appear on the soft skin behind the ears, around the eyes and on the cheeks. These lines generally become visible from the age of 9 or 10 years of age. At this point I must tell you that the AT clinic at Johns Hopkins was very well co-ordinated and all the staff were very professional.
Home was the next stop, to carry on life with the huge amount of medical info we had been armed with. This info has been vital to us over the years and we draw on it daily even now nor than 14 years down the line. There is however always something which can not be planned for. Those of you who are lucky enough to have children who are in their teens will know that adolescence is a huge challenge for anyone. Now try hooking that up to a teenager who's only ambitions are to go out and be as wild as he is supposed to - but does not have the physical ability to keep up with his peers. What do you end up with? - AAAAARGH!
George is now 16 years old, his movements have become very unco-ordinated and he needs to have help balancing. He uses an electric chair to get around outside. What does he want most? The same as any 16 year old hot blooded male. Long legs, blond flowing hair and a decent size chest all tucked into a mini skirt. Getting the picture?
The red lines have never appeared so in June 2009 we saw a neurologist who cast doubt on the diagnosis of AT. We had an MRI of George's brain done and the atrophy of the brain so far is not consistent with that of AT, so now we have a diagnosis of "Spino Cerebelar Degeneration". The problem is that this diagnosis is very broad and incorporates a wide spectrum of different ataxia's, each with slightly different problems.
This diagnosis had a bad effect on all of us as we felt that we no longer had a specific name for the disease. George went into the worst depression he ever experienced. We were all so very lost!
Thursday, November 11, 2010
What now?
First we needed to find out more about George's possible diagnosis. Ataxia Telangiectasia or "AT" as we will call in now is a genetic disease which attacks the cerebellum part of the brain. The cerebellum is what controls ALL muscles in the body. For more medical type info go to www.ninds.nih.gov . It is really important to arm yourself with as much info as possible, but such brutally honest info can be heart wrenching when applied to your own child.
It is so easy for you to feel sorry for your child and for yourself when you get such bad news. My wife and I took a decision to always look for the positives and when times get tough, as they were sure to get, to try be strong for each other and for our children.
It is so easy for you to feel sorry for your child and for yourself when you get such bad news. My wife and I took a decision to always look for the positives and when times get tough, as they were sure to get, to try be strong for each other and for our children.
Wednesday, November 10, 2010
A long long time ago, or maybe just yesterday...
Ever heard of the phrase "young and stupid"? Well that's when most of us decide to have kids. Don't get me wrong, I love my kids but years ago when we (my wife and I) decided to have kids we were young and very stupid. What I mean is that if I had any idea of all that could go wrong, I may have thought it out a bit before bravely "going where no man had gone before".
I have two lovely children age 16 and 14. My first born is a son, George, and a daughter for the second. We were planing another child three years after my daughter. George was around one year old when I noticed that he seemed more off balance than other children his age.
Alarm bells!
It was difficult at first for other people to see the movements but after another year (two years old) our family doctor noticed the jerky movements and unsteady gait. We knew there was something serious when we were refered to The Childrens Red Cross Hospital in Cape Town.
George was given a "probable" diagnosis of Ataxia Telangjiektasia ( I may need to check the spelling). No definate diagnosis could be made in South Africa - we were off to America!
I have two lovely children age 16 and 14. My first born is a son, George, and a daughter for the second. We were planing another child three years after my daughter. George was around one year old when I noticed that he seemed more off balance than other children his age.
Alarm bells!
It was difficult at first for other people to see the movements but after another year (two years old) our family doctor noticed the jerky movements and unsteady gait. We knew there was something serious when we were refered to The Childrens Red Cross Hospital in Cape Town.
George was given a "probable" diagnosis of Ataxia Telangjiektasia ( I may need to check the spelling). No definate diagnosis could be made in South Africa - we were off to America!
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