William Harper's Fight
Donation protected
Briefly we are raising funds for my sons surgical needs, they cannot be met in the uk..
William was born on Mother's Day of 2012....we were none the wiser about his condition until the birth.
William has VACTERL. In VACTERL each letter stands for a diffrent condition
To date William has had 29 surgical procedures and 31 general anesthetics . He is one amazing young man and bring a smile to the face of anyone he meets! A right cheeky chappy! :)
V vertabra
william has hemi Vertabra in his lumber and thoracic areas of his spine causing scoliosis. He has a mixture of bone in the cervical are. At present his curve is developing quite fast and is causing him pain on a daily basis. William struggle to walk most days and some days because of his tethered cord, he looses feeling in his legs....that is very upsetting to witness.
A anal
william was born with complete anal atresia (no opening at his bottom)
at about 2/3 weeks old Williams surgeons created him a stoma. This has since been reversed but daily we struggle with bowl incontinance, he is almost always sore with broken bleeding skin around his bottom because of how frequent he has to poo....best way I could describe it is a contant dripping tap.
C cardiac
william had a tapvd and underwent a very lengthy open heart surgery at 14 hours old. It was a very hit or miss surgery and signing that consent form was one of the hardest things I have ever had to do, I was told that under no circumstance would he survive without the surgery but there was also a chance he wouldn't make the surgery. At present he has a small asd (hole in heart) he is being monitered and they will review it when he is 5.
T tracheo esophageal atresia
william had a fistular between his trachea and his esophagus making aspiration very likely! This was corrected at the same time as the open heart surgery was performed.
in the long run the tof means William has abnormal function of the esophagus means that he chokes on almost everything he eats......this has lead to quite a few trips in a ambulance I can tell you.
E esophageal atresia
Williams esophagus wasn't connected to his stomach meaning that he was unable to eat. He didn't eat until he was three weeks old when they did the surgery to correct the ea.
he has since had to have surgery to stretch the scar tissues from operation site.
R renal
William had relativly small problems here.....he had hypospadius, that was corrected in surgery at a few months old, he has undecended testicles, yet to be operated on, he has webbing at the base of his penis, that, to is yet to be operated on.
L limbs
William has radial club hand, his radius is tiny, this causes the arm to look hugely disfigured.
it is L that we are running this campaign for.
William was due to have surgery on 26/03/15 he was going to have a procedure called centralisation.
centralisation straightens the child's hand by means of daily distractions (twists) of a huge and heavy arm frame.
It has 50%-100% chance of reaccurance meaning over half of the children that have this surgery have to have it repeated.
Williams recently went to clinic to look at the frames, he was genuinely scared.
Anyhow on my many late nights researching I came across a procedure called ulnarisation and a Dr Paley.
Ulnarisation is a procedure that gives the child a straight hand immediately post operatively!!
there is no frame!
there are no daily twist!
there are no external fixings!!
THERE HAS NEVER BEEN A CHILD HAVE TO HAVE A REPEATED SURGEY!!
0% reaccurance!!
as luck would have it, Dr Paley was in the uk the week after I decided that this was what I was going to get for William!! My little baby who has been through so much, been to hell and back too many times!
i contacted Dr Paley's team in Florida and amazingly he agreed to give me 10 minutes of his time! :)
During our our consultationg Dr Paley convinced me more so than I already was, that this was the only surgery I should consider!
fast forward a few weeks.....I have bugged our uk orthopaedic surgeon enough that he has agreed to come with us to learn how to do this ulnarisation!!
He is self funding his trip too!
once he has learned the procedure we will begin our campaign with the NHS to make this the surgery of choice!
In the uk we pride ourselves on being at the forefront of modern medicine! But are we??
How can we be? There are these procedures yielding fantastic results, occurring all over the world! We need to convince our NHS to be a sponge......to soak up all of this valuble and much needed information and be pioneers in the world of medicine and surgery!
i honestly feel that we the general public are morally obliged to see t his happen!!
many hands makes for light work!
We have to push and push for the best! Our children are worth the best!! I will fight with every last breath to make this a reality for these children!
These children need someone to fight for them, they are our future doctors, pilots, dustbin men and market stall holders! They are our future and they deserve the world!
please if you have anything spare, donate to our campaign, our son will benifit hugely but so will future medicine!
thank you for taking the time to read a small snippit from Williams amazing life. It means so much to my family and I. He genuinely is our hero!
Much love sam
(Williams mummy)
William was born on Mother's Day of 2012....we were none the wiser about his condition until the birth.
William has VACTERL. In VACTERL each letter stands for a diffrent condition
To date William has had 29 surgical procedures and 31 general anesthetics . He is one amazing young man and bring a smile to the face of anyone he meets! A right cheeky chappy! :)
V vertabra
william has hemi Vertabra in his lumber and thoracic areas of his spine causing scoliosis. He has a mixture of bone in the cervical are. At present his curve is developing quite fast and is causing him pain on a daily basis. William struggle to walk most days and some days because of his tethered cord, he looses feeling in his legs....that is very upsetting to witness.
A anal
william was born with complete anal atresia (no opening at his bottom)
at about 2/3 weeks old Williams surgeons created him a stoma. This has since been reversed but daily we struggle with bowl incontinance, he is almost always sore with broken bleeding skin around his bottom because of how frequent he has to poo....best way I could describe it is a contant dripping tap.
C cardiac
william had a tapvd and underwent a very lengthy open heart surgery at 14 hours old. It was a very hit or miss surgery and signing that consent form was one of the hardest things I have ever had to do, I was told that under no circumstance would he survive without the surgery but there was also a chance he wouldn't make the surgery. At present he has a small asd (hole in heart) he is being monitered and they will review it when he is 5.
T tracheo esophageal atresia
william had a fistular between his trachea and his esophagus making aspiration very likely! This was corrected at the same time as the open heart surgery was performed.
in the long run the tof means William has abnormal function of the esophagus means that he chokes on almost everything he eats......this has lead to quite a few trips in a ambulance I can tell you.
E esophageal atresia
Williams esophagus wasn't connected to his stomach meaning that he was unable to eat. He didn't eat until he was three weeks old when they did the surgery to correct the ea.
he has since had to have surgery to stretch the scar tissues from operation site.
R renal
William had relativly small problems here.....he had hypospadius, that was corrected in surgery at a few months old, he has undecended testicles, yet to be operated on, he has webbing at the base of his penis, that, to is yet to be operated on.
L limbs
William has radial club hand, his radius is tiny, this causes the arm to look hugely disfigured.
it is L that we are running this campaign for.
William was due to have surgery on 26/03/15 he was going to have a procedure called centralisation.
centralisation straightens the child's hand by means of daily distractions (twists) of a huge and heavy arm frame.
It has 50%-100% chance of reaccurance meaning over half of the children that have this surgery have to have it repeated.
Williams recently went to clinic to look at the frames, he was genuinely scared.
Anyhow on my many late nights researching I came across a procedure called ulnarisation and a Dr Paley.
Ulnarisation is a procedure that gives the child a straight hand immediately post operatively!!
there is no frame!
there are no daily twist!
there are no external fixings!!
THERE HAS NEVER BEEN A CHILD HAVE TO HAVE A REPEATED SURGEY!!
0% reaccurance!!
as luck would have it, Dr Paley was in the uk the week after I decided that this was what I was going to get for William!! My little baby who has been through so much, been to hell and back too many times!
i contacted Dr Paley's team in Florida and amazingly he agreed to give me 10 minutes of his time! :)
During our our consultationg Dr Paley convinced me more so than I already was, that this was the only surgery I should consider!
fast forward a few weeks.....I have bugged our uk orthopaedic surgeon enough that he has agreed to come with us to learn how to do this ulnarisation!!
He is self funding his trip too!
once he has learned the procedure we will begin our campaign with the NHS to make this the surgery of choice!
In the uk we pride ourselves on being at the forefront of modern medicine! But are we??
How can we be? There are these procedures yielding fantastic results, occurring all over the world! We need to convince our NHS to be a sponge......to soak up all of this valuble and much needed information and be pioneers in the world of medicine and surgery!
i honestly feel that we the general public are morally obliged to see t his happen!!
many hands makes for light work!
We have to push and push for the best! Our children are worth the best!! I will fight with every last breath to make this a reality for these children!
These children need someone to fight for them, they are our future doctors, pilots, dustbin men and market stall holders! They are our future and they deserve the world!
please if you have anything spare, donate to our campaign, our son will benifit hugely but so will future medicine!
thank you for taking the time to read a small snippit from Williams amazing life. It means so much to my family and I. He genuinely is our hero!
Much love sam
(Williams mummy)
Organizer
Jill Hutchison
Organizer