This is a story of my brave boy Sam, he was born in 1990 at first everything seemed fine untill a few hours old he started struggling to breath and turned a funny blue colour, doctors very quickly realised he had a serious heart condition called transpositon of the great arteries ( to us that meant his heart was plumbed in the wrong way round ) he was rushed from our home town of Taunton Somerset to Bristol childrens hospital were he underwent life saving surgury to tempory repair untill he was a little bit bigger to try and fix, the first year of his life was spent in hospital.
Year 2
Sam had open heart surgery to try and correct but the doctors could not do what they wanted to do as the heart had a number of other defects that would require more surgery later on in life however they did what they could do and to this day i am thankfull they saved my son's life.
Year 3
Sam grew stronger, cheeky, naughty, funny, but most of all was the most loving little chap and everyone who met him instantly fell in love with his cheeky charm, he went to main stream school, however did need a little extra help as he was diagnosed with mild learning difficulties, the next few years passed very quickly with yearly visits to the hospital to check on his heart, everything seemed to be going fine apart from not being able to do most things a normal little boy can do like play football, cycling but he had a life and for that alone i was greatful.
Year 14
Oh dear this is were things really started getting rough, more surgery to fix the other defects, in and out of hospital we went, until the doctors decided to fit a pacemaker by this time a number of his doctors had many sleepless nights and not to mention some of them turning grey with the worry of our Sam.
CARDIIAC ARREST at 14 the pain and grief of watching my cheeky chap fight for his life but thats what he did fight... he carried on fighting had many more nights, days, weeks in hospital but never once did he say "why me" I did though, why why did this happen to my lovely cheeky little boy.
Sam lived life to the full he played drums, tried skateboarding but spent most of the time just holding his skateboard at least he was trying bless him, he made friends and had lots of them always in my house i remember i use to count the shoes at the bottom of the stairs to see how many were in his room lol, smiling to myself just thinking about it, they were the good times.
He got a girlfried Rebecca and went on to have a beautifull baby boy Zachary who is the apple of his daddies eye.
TODATE
How can one person be so unlucky just before christmas 2016 Sam becam ill with a chest infection, very serious for anyone but more so with Sam and his bad heart but the story does not end there, while in hospital they found he had a very rare kidney disease that only 20 people had ever had jn the world... really to be this unlucky how cruel.. any way he is now in
The renal unit in Oxford having dialysis daily , he has blown up like a balloon, cant walk, so much medication, he's loosing his 26 year battle, not once untill now have i seen my son cry about his illness but today he is and me we have had enough, we dont know what the future holds all we know is his heart is not coping, even if he does win yet another battle he will need dialysis probably for life, oh and forgot to say a heart transplant, we need help he has a 8 month old baby who's not seeing his daddy, ME i dont normlly talk about me I'm just the one who was chosen to take care of a sick child/youngman, was told once special children are only given to special people... no thats not me, i just love my son like any mum does, but I am asking for some help for once in the 26 years of my sons life, I am a single woman trying to juggle a full time job, being with sam, helping with the baby, travelling to see him when he's scared at 1am in the morning climbing into his hospital bed and soothing him telling him all will be ok...what i need is help financial help, to be able to take some leave from work to be there 24hrs a day if need be but I cant do that at the moment i have bills like us all to pay, We dont know how long Sam has but what ever time we have left we want to spend together without all the other worries of mundane stuff to do with worring about money or in our case the lack of it...
Thank You for reading our story I will keep everyone updated.
Sharon.... aka broken mum x
Year 2
Sam had open heart surgery to try and correct but the doctors could not do what they wanted to do as the heart had a number of other defects that would require more surgery later on in life however they did what they could do and to this day i am thankfull they saved my son's life.
Year 3
Sam grew stronger, cheeky, naughty, funny, but most of all was the most loving little chap and everyone who met him instantly fell in love with his cheeky charm, he went to main stream school, however did need a little extra help as he was diagnosed with mild learning difficulties, the next few years passed very quickly with yearly visits to the hospital to check on his heart, everything seemed to be going fine apart from not being able to do most things a normal little boy can do like play football, cycling but he had a life and for that alone i was greatful.
Year 14
Oh dear this is were things really started getting rough, more surgery to fix the other defects, in and out of hospital we went, until the doctors decided to fit a pacemaker by this time a number of his doctors had many sleepless nights and not to mention some of them turning grey with the worry of our Sam.
CARDIIAC ARREST at 14 the pain and grief of watching my cheeky chap fight for his life but thats what he did fight... he carried on fighting had many more nights, days, weeks in hospital but never once did he say "why me" I did though, why why did this happen to my lovely cheeky little boy.
Sam lived life to the full he played drums, tried skateboarding but spent most of the time just holding his skateboard at least he was trying bless him, he made friends and had lots of them always in my house i remember i use to count the shoes at the bottom of the stairs to see how many were in his room lol, smiling to myself just thinking about it, they were the good times.
He got a girlfried Rebecca and went on to have a beautifull baby boy Zachary who is the apple of his daddies eye.
TODATE
How can one person be so unlucky just before christmas 2016 Sam becam ill with a chest infection, very serious for anyone but more so with Sam and his bad heart but the story does not end there, while in hospital they found he had a very rare kidney disease that only 20 people had ever had jn the world... really to be this unlucky how cruel.. any way he is now in
The renal unit in Oxford having dialysis daily , he has blown up like a balloon, cant walk, so much medication, he's loosing his 26 year battle, not once untill now have i seen my son cry about his illness but today he is and me we have had enough, we dont know what the future holds all we know is his heart is not coping, even if he does win yet another battle he will need dialysis probably for life, oh and forgot to say a heart transplant, we need help he has a 8 month old baby who's not seeing his daddy, ME i dont normlly talk about me I'm just the one who was chosen to take care of a sick child/youngman, was told once special children are only given to special people... no thats not me, i just love my son like any mum does, but I am asking for some help for once in the 26 years of my sons life, I am a single woman trying to juggle a full time job, being with sam, helping with the baby, travelling to see him when he's scared at 1am in the morning climbing into his hospital bed and soothing him telling him all will be ok...what i need is help financial help, to be able to take some leave from work to be there 24hrs a day if need be but I cant do that at the moment i have bills like us all to pay, We dont know how long Sam has but what ever time we have left we want to spend together without all the other worries of mundane stuff to do with worring about money or in our case the lack of it...
Thank You for reading our story I will keep everyone updated.
Sharon.... aka broken mum x
Organizer
sharon lewis
Organizer