Wormy
29-07-2009, 04:24 PM
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Maximo the Great, the Brave, the Vibrant!
Let me start by saying yes this is a Windows Mobile and Technology based site... and so I don’t usually go ‘off topic’, but this is one of those seldom times that an aspect of life just grabs you...
Let me introduce you to Maximo... the Great, the Brave, the Vibrant, the Inspiration!
http://www.technologyatplay.com/wildaboutmax/maximo.jpg
With the exception of my blood relatives (ie: mum, dad, sister, grandparents, etc... and my wonderful wife), there is only one other person for whom I have known for 38 of my 42 years, and that is my very dear friend Jamie.
Jim (though I know he doesn’t like being called Jim that much anymore – but hey, I’ve called him that for 38 years and that’s a hard habit to break), is one of those people in life that you don’t meet that often, let alone have the honour to have as a friend... and I’ve enjoyed that honour through 38 years of highs and lows... and while we have had times where we’ve not retained such a close contact, he has always been and always will be a brother to me – the one that I did not have.
And so here’s the very short version of an amazing story of joy, sadness, inspiration and wonder...
Jim met Vanessa (Ness), and you just knew by looking at them that they had that 'thing'... that 'thing' that a lot of people spend their entire life looking for - though never find.
Jim and Ness went through their courtship (all the time embracing their 'thing'), until their day came, and they got married.
Like all young couples, Jim and Ness decided to start a family. On June 26, 1993 Maximo (the great) entered the world... blue eyed and full of life...
Here’s Maxi’s story...
http://www.technologyatplay.com/wildaboutmax/maxis_journey.jpg
“Maximo the great!
Maxi was born on June 26 1993. He was a beautiful baby with big blue eyes and a vibrant spirit.
As a toddler he was extremely busy running around, riding his trike, or playing his favourite game shooting hoops! In fact his parents thought he could become the new Michael Jordan as Maxi would watch Space Jam and the Michael Jordan training video continually. Maxi soon mastered the perfect shooting technique.
Maxi began school in 1999 but sadly by the end of the year he was unable to write his name and simple language had not developed.“
Parental love is a power and strength that can only be experienced upon the birth of your own child, and with concern for their son, Jim and Ness sought medical advice to assist the developmental need of Maxi.
What they thought was a developmental area saw their lives (Jim, Ness and Maxi), take an unimaginable turn...
“Maximo the brave!
In early 2000 James and Vanessa received the devastating news; Maximo has a rare and degenerative genetic condition that would eventually cut his life short... Maxi has Sanfilippo Syndrome. Sanfilippo Syndrome is also known as Mucopolysaccharidoses 111 or MPS 3.
This means Maxi is missing the enzyme needed to break down the MPS waste resulting in a build up of waste in his cells, particularly effecting the central nervous system. Maxi will slowly lose his skills and not be able to talk, walk or eat.
Maxi's family are determined to give their son the best chance at life however difficult and however short”.
Jim and Ness have seen their family grow from just the two of them... to the three of them (Maxi), to include Jonah (now 7) and Eli (who is shortly to turn 1)...
Jim and Ness manage the balance of increasing care for Maxi as well as being a loving mum and dad to all three of their beautiful sons.
Jim & Ness tell me that there are good days and there are tough days, and then there are the really tough days!
The toughest aspect they fight is endeavouring at every opportunity to give their son (Maxi) the best of care and quality of life!
Max is now 16 and sadly he has lost the ability to walk, write and talk... What makes the situation worse, if not unacceptable, is Maxi's suffering is made worse by the fact he doesn’t have some of the basic essentials that would make his life all the more comfortable.
A hospital bed and special mattress, which would allow him to sit up and be free from painful bed sores. Would you not want that for your child?
While never for one minute losing sight of their love and admiration for their three beautiful sons, Jim and Ness remain vigilant in their pursuit of wanting to raise awareness of this debilitating disease... MPS3.
Jim and Ness came to QLD for a holiday in January of this year (2009). They bought Jonah and Eli with them... (Maxi was in care)... so they could have a break. My two very dear friends looked tired. Don't get me wrong for one minute... they are amazing parents, lovely people and wonderful parents... but they looked tired, they needed a break - even if only for a week.
If you are going to admire a family for their unequivocal love and determination for their child, then you but only admire Jim and Ness (and the three boys)!
I understand that Jim is my best mate on this planet... a brother to me... and Ness is a dear, dear friend... but the good news is that we can all help make a difference to Maxi's life, and the life of all sufferers and families of sufferers of MPS.
http://www.technologyatplay.com/wildaboutmax/family_on_beach.jpg
“We have a dream!
Maximo still has many places to go and people to see. Due to a significant decline in Maxi’s condition (July 2009), family and friends have banded together to fundraise to ensure Max can receive the equipment and support needed to give him the best quality of life."
Maxi’s family wish to raise awareness of this rare genetic disorder in the broader community and hope new therapies and treatments will be developed in the future.
There is no cure for MPS 3, however scientists are working hard to find a way to replace the missing enzyme before the damage begins.
You can find out more about how YOU can help Maxi by visiting Wild about Max (http://www.wildaboutmax.org.au). Wild about Max is a site run by Maxi's mum and dad - Jim and Ness.
You can also follow Maxi's Blog here (http://www.technologyatplay.com/wildaboutmax).
For more information on MPS see MPS Society (www.mpssociety.org.au)
Find out more about MPS3 and help raise awareness and work toward a possible cure... in the future...
http://www.technologyatplay.com/forums/images/buttons/comment_on_this_article.gif
Maximo the Great, the Brave, the Vibrant!
Let me start by saying yes this is a Windows Mobile and Technology based site... and so I don’t usually go ‘off topic’, but this is one of those seldom times that an aspect of life just grabs you...
Let me introduce you to Maximo... the Great, the Brave, the Vibrant, the Inspiration!
http://www.technologyatplay.com/wildaboutmax/maximo.jpg
With the exception of my blood relatives (ie: mum, dad, sister, grandparents, etc... and my wonderful wife), there is only one other person for whom I have known for 38 of my 42 years, and that is my very dear friend Jamie.
Jim (though I know he doesn’t like being called Jim that much anymore – but hey, I’ve called him that for 38 years and that’s a hard habit to break), is one of those people in life that you don’t meet that often, let alone have the honour to have as a friend... and I’ve enjoyed that honour through 38 years of highs and lows... and while we have had times where we’ve not retained such a close contact, he has always been and always will be a brother to me – the one that I did not have.
And so here’s the very short version of an amazing story of joy, sadness, inspiration and wonder...
Jim met Vanessa (Ness), and you just knew by looking at them that they had that 'thing'... that 'thing' that a lot of people spend their entire life looking for - though never find.
Jim and Ness went through their courtship (all the time embracing their 'thing'), until their day came, and they got married.
Like all young couples, Jim and Ness decided to start a family. On June 26, 1993 Maximo (the great) entered the world... blue eyed and full of life...
Here’s Maxi’s story...
http://www.technologyatplay.com/wildaboutmax/maxis_journey.jpg
“Maximo the great!
Maxi was born on June 26 1993. He was a beautiful baby with big blue eyes and a vibrant spirit.
As a toddler he was extremely busy running around, riding his trike, or playing his favourite game shooting hoops! In fact his parents thought he could become the new Michael Jordan as Maxi would watch Space Jam and the Michael Jordan training video continually. Maxi soon mastered the perfect shooting technique.
Maxi began school in 1999 but sadly by the end of the year he was unable to write his name and simple language had not developed.“
Parental love is a power and strength that can only be experienced upon the birth of your own child, and with concern for their son, Jim and Ness sought medical advice to assist the developmental need of Maxi.
What they thought was a developmental area saw their lives (Jim, Ness and Maxi), take an unimaginable turn...
“Maximo the brave!
In early 2000 James and Vanessa received the devastating news; Maximo has a rare and degenerative genetic condition that would eventually cut his life short... Maxi has Sanfilippo Syndrome. Sanfilippo Syndrome is also known as Mucopolysaccharidoses 111 or MPS 3.
This means Maxi is missing the enzyme needed to break down the MPS waste resulting in a build up of waste in his cells, particularly effecting the central nervous system. Maxi will slowly lose his skills and not be able to talk, walk or eat.
Maxi's family are determined to give their son the best chance at life however difficult and however short”.
Jim and Ness have seen their family grow from just the two of them... to the three of them (Maxi), to include Jonah (now 7) and Eli (who is shortly to turn 1)...
Jim and Ness manage the balance of increasing care for Maxi as well as being a loving mum and dad to all three of their beautiful sons.
Jim & Ness tell me that there are good days and there are tough days, and then there are the really tough days!
The toughest aspect they fight is endeavouring at every opportunity to give their son (Maxi) the best of care and quality of life!
Max is now 16 and sadly he has lost the ability to walk, write and talk... What makes the situation worse, if not unacceptable, is Maxi's suffering is made worse by the fact he doesn’t have some of the basic essentials that would make his life all the more comfortable.
A hospital bed and special mattress, which would allow him to sit up and be free from painful bed sores. Would you not want that for your child?
While never for one minute losing sight of their love and admiration for their three beautiful sons, Jim and Ness remain vigilant in their pursuit of wanting to raise awareness of this debilitating disease... MPS3.
Jim and Ness came to QLD for a holiday in January of this year (2009). They bought Jonah and Eli with them... (Maxi was in care)... so they could have a break. My two very dear friends looked tired. Don't get me wrong for one minute... they are amazing parents, lovely people and wonderful parents... but they looked tired, they needed a break - even if only for a week.
If you are going to admire a family for their unequivocal love and determination for their child, then you but only admire Jim and Ness (and the three boys)!
I understand that Jim is my best mate on this planet... a brother to me... and Ness is a dear, dear friend... but the good news is that we can all help make a difference to Maxi's life, and the life of all sufferers and families of sufferers of MPS.
http://www.technologyatplay.com/wildaboutmax/family_on_beach.jpg
“We have a dream!
Maximo still has many places to go and people to see. Due to a significant decline in Maxi’s condition (July 2009), family and friends have banded together to fundraise to ensure Max can receive the equipment and support needed to give him the best quality of life."
Maxi’s family wish to raise awareness of this rare genetic disorder in the broader community and hope new therapies and treatments will be developed in the future.
There is no cure for MPS 3, however scientists are working hard to find a way to replace the missing enzyme before the damage begins.
You can find out more about how YOU can help Maxi by visiting Wild about Max (http://www.wildaboutmax.org.au). Wild about Max is a site run by Maxi's mum and dad - Jim and Ness.
You can also follow Maxi's Blog here (http://www.technologyatplay.com/wildaboutmax).
For more information on MPS see MPS Society (www.mpssociety.org.au)
Find out more about MPS3 and help raise awareness and work toward a possible cure... in the future...
http://www.technologyatplay.com/forums/images/buttons/comment_on_this_article.gif