River's Health Help
Donation protected
MY EMAIL ADDRESS IS:
[email redacted].uk
SAVE THE RIVER FOUNDATION!
Many of you know that my 18yr old son, Luke, died suddenly in 2012 ..
This campaign is to help his younger brother, River, now 18, who suffers from the same genetic diseases as Luke.
Since Luke's death, River has been fitted with a defibrillator to his heart so that he doesn't suffer the same fate as his father and older brother, a sudden death due to Sudden Heart Arrhythmia (SADS) which has no identifiable symptoms other than male relatives of somebody who's died from this silent killer having a 50% chance of having the same sudden arrhythmia ..
River was 2 when his father died and 15 when his brother died ..
On top of all this, River has the same rare genetic condition that I (his mother) has - Ehles Danlos Syndrome .. (a fault in the Colegen Gene) .. the type that we have causes our joints to slip out of place and the tendons to tear and stretch - among many other serious symptoms which can cause sudden death, such as sudden tears in the valves of the heart, spleen, etc.
However, the main problem is that sufferers of EDS suffer the symptoms of common illnesses such as colds & flu to be amplified 9 times that of a normal body .. we tire easily, walking upstairs once for us, would be the same as 9 times for anyone else .. some days, our body's will not move at all due to exhaustion ..
We live in the UK which means that 7-8mths of the year is spent indoors - not leaving the house for weeks on end for fear of catching a chill or bumping into someone that is ill .. this is no exaggeration - as God is my witness - this is how difficult it is for us - I don't care about myself - I care about him - as soon as the weather turns towards Autumn, his joints start cracking constantly and he takes to his bed for days on end - it is brereaking my heart to watch him suffer like this ..
thankfully the British Govt looks after its genuinely sick and disabled people - it cannot however, change the weather for the better - but it will allow us to live in a country within the EU and still receive our full Disability Allowances ..
the only family River and I have, is my mother & step-father who live in Spain - I want to relocate with River so that we will both benefit from the extrememly warm climate and the have the ability to do the only excercise sufferers from EDS can do safely - swimming.
If River can swim each day and keep warm .. I know that he will have something like the life any 18yr old has ..
So .. we want to purchase a mobile home on a site that has heated pools indoors in the winter and the choice of 3 pools in the summer, has Tai Chi sessions in the morning etc .. a good program with plenty of things for him to do.. we could rent an appartment but wouldn't have an indoor/heated pool for the Winter ..
PLEASE help me - it is killing me watching him suffer each day, this winter has almost finished me off ..
Please if you can spare even 2 or 3 £ or $ .. if everyone gave just a little - maybe this time next year we will be able to move, I dont expect anything but if I don't ask, I won't get ..
RIVER DESERVES A SHOT AT LIFE ..
PLEASE HELP MY SON
THANK YOU
GODSPEED
I don't expect to raise anything near the goal I've set to change River's World .. (average cost of a large [used] home) ..
however .. I don't want to miss the chance of a donor with the means to totally help us realise our pain-free existence coming along ..
http://villamarcaravansales.weebly.com/ref-2.html
[email redacted].uk
SAVE THE RIVER FOUNDATION!
Many of you know that my 18yr old son, Luke, died suddenly in 2012 ..
This campaign is to help his younger brother, River, now 18, who suffers from the same genetic diseases as Luke.
Since Luke's death, River has been fitted with a defibrillator to his heart so that he doesn't suffer the same fate as his father and older brother, a sudden death due to Sudden Heart Arrhythmia (SADS) which has no identifiable symptoms other than male relatives of somebody who's died from this silent killer having a 50% chance of having the same sudden arrhythmia ..
River was 2 when his father died and 15 when his brother died ..
On top of all this, River has the same rare genetic condition that I (his mother) has - Ehles Danlos Syndrome .. (a fault in the Colegen Gene) .. the type that we have causes our joints to slip out of place and the tendons to tear and stretch - among many other serious symptoms which can cause sudden death, such as sudden tears in the valves of the heart, spleen, etc.
However, the main problem is that sufferers of EDS suffer the symptoms of common illnesses such as colds & flu to be amplified 9 times that of a normal body .. we tire easily, walking upstairs once for us, would be the same as 9 times for anyone else .. some days, our body's will not move at all due to exhaustion ..
We live in the UK which means that 7-8mths of the year is spent indoors - not leaving the house for weeks on end for fear of catching a chill or bumping into someone that is ill .. this is no exaggeration - as God is my witness - this is how difficult it is for us - I don't care about myself - I care about him - as soon as the weather turns towards Autumn, his joints start cracking constantly and he takes to his bed for days on end - it is brereaking my heart to watch him suffer like this ..
thankfully the British Govt looks after its genuinely sick and disabled people - it cannot however, change the weather for the better - but it will allow us to live in a country within the EU and still receive our full Disability Allowances ..
the only family River and I have, is my mother & step-father who live in Spain - I want to relocate with River so that we will both benefit from the extrememly warm climate and the have the ability to do the only excercise sufferers from EDS can do safely - swimming.
If River can swim each day and keep warm .. I know that he will have something like the life any 18yr old has ..
So .. we want to purchase a mobile home on a site that has heated pools indoors in the winter and the choice of 3 pools in the summer, has Tai Chi sessions in the morning etc .. a good program with plenty of things for him to do.. we could rent an appartment but wouldn't have an indoor/heated pool for the Winter ..
PLEASE help me - it is killing me watching him suffer each day, this winter has almost finished me off ..
Please if you can spare even 2 or 3 £ or $ .. if everyone gave just a little - maybe this time next year we will be able to move, I dont expect anything but if I don't ask, I won't get ..
RIVER DESERVES A SHOT AT LIFE ..
PLEASE HELP MY SON
THANK YOU
GODSPEED
I don't expect to raise anything near the goal I've set to change River's World .. (average cost of a large [used] home) ..
however .. I don't want to miss the chance of a donor with the means to totally help us realise our pain-free existence coming along ..
http://villamarcaravansales.weebly.com/ref-2.html
Organizer
Carol Jones
Organizer
