DANIEL


This memorial website was created in the memory of our beautiful son,  brother, nephew, grandson and hero Daniel Connacher who was born in United Kingdom on July 13, 1993 and passed away on September 09, 2006 at the age of 13. We will love and miss him forever.



Please help us to keep our Beloved Daniels memory alive by lighting a candle..

 
Please also check out our Legacy section.

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Daniel was our happy, fun loving 13 year old. He spent most of his time teaching himself to play the guitar. He liked heavy metal bands like Metallica and Avenged Sevenfold.
He was a kind and quiet natured boy who always thought of his family and others first. 

Daniel has two older sisters and one older brother who miss him so much. They always spent time together whenever possible. He went to karate with his sister Amanda. He liked to spend time at the beach with his sister Elaine and friends. He also spent time playing x box games with his brother Paul. 

Daniel had just finished his first term at secondary school and was looking forward to spending time with his friends. He became ill the first week in June.  Our GP said he had tonsilitis and he was given a course of antibiotics.. Over the next couple of weeks Daniel was still feeling unwell with fevers and high tempratures..GP said it was a virus..
Six weeks later Daniel collapsed and was finally admitted to hospital on the 17th July where he spent the next three weeks. On admission blood tests showed he had Epstein Barr Virus with spiking temps over 40.6.  He was given paracetamol every four hours. He had swollen glands and Ultrasound scans showed his liver and spleen were also swollen.

 Over the next few days Daniel developed ulcers inside his nose and at the back of his throat..He further developed lesions on his  hands, ears and feet . He had continuous nose bleeds and found it difficult to eat and drink and began to lose weight rapidly. A drip was given to stop him from dehydrating. We had to bring in  food for him as we were told the kitchen could'nt time their meals around his fevers. 

Further tests showed his red blood cells were abnormal. We asked them to do a bone marrow  biopsy /lymph node biopsy to find out what was wrong.. 
 
This was refused. They said there was no need to do this as they did not suspect he had cancer or leukemia..They said it was 'only glandular fever' and that we his parents were worrying too much.

We have seen Daniels records from this first hospital he was in and here is a quote from those records regarding why they would not do a bone marrow biopsy  " PARENTS THINK DANIEL HAS LEUKEMIA AND WE ARE NOT TELLING THEM OF THIS''  " PANIC"  this is what they actually wrote.
   

Daniel's condition continued to get worse and on many occasions we asked for him to be transfered to another hospital in the hope of him receiving better treatment..

This was also refused.

 At the begining of the third week Daniel had lost over one stone in weight. We were continually told that this virus would go away and that Daniel would get better. One of these so-called doctors wrote in records, "'been feeling unwell with glandular fever since day of admission, should only last another seven to ten days"..No matter how many times we told them Daniel had been ill six weeks previous they continued to ignore this..

Daniel was in this first hospital for three weeks and despite our concerns they did absolutly nothing to diagnose and treat him .
These so-called doctors who we trusted should now be ashamed of themselves.

They could have stopped this!
 
Their failure to diagnose and treat our son is unforgivable 

 Monday 7th August Daniel was so sick that they transferred him to another hospital where he spent the next five weeks. 

Daniel had numerous blood tests, x-rays and scans done,we were told  it was a severe case of Epstein Barr Virus.. 


On Wednesday 9th August  a doctor told us that they suspected he had a complication of Epstein Barr Virus (HLH )Hemophagocytic Lymphohistiocytosis.  ..Like many other parents we were unaware of this syndrome and were never given a full explanation about how serious it was.. Even although we asked many questions we were told that  Daniels main concern was the Epstein Barr Virus, and that once this went away Daniel would get better..

 On the 18th August ( 10 days later from suspicion ) it was confirmed by a bone marrow biopsy that Daniel had HLH.. They told us they could not give Daniel any treatment for HLH because of the toxicity..they also said he would not be able to tolerate treatment because he was in liver failure.

Over the next few days Daniel's condition worsened and they still done nothing ...

They could have stopped this!
 
 
We now know that treating this disorder is the only chance of survival despite the toxicity of the chemotherapeutic drugs! 

These so-called doctors knew our son had this devastating illness and yet they did nothing to stop it until it was far
too late,  this is unforgivable!
  
They kept telling us once the virus went away he would get better..

They told us Hemophagocytic Lymphohistiocytosis was not Daniels main concern..

 
We believed and trusted them..

   
All we asked for was that they give our son whatever treatment was necessary to make him better..

On Saturday 26th August Daniel's condition worsened and he was admitted to intensive care where he was put on life support machines..

   What we know now..

HLH syndrome affects the immune system and requires immediate aggresive chemotherapy.. It is advised that treatment is given even on suspicion...It is the only chance ..

HLH is a disorder of the white blood cells which are essential for fighting off viruses,  especially EBV,  in EBV/HLH these white blood cells,  T-cells and macrophages,  proliferate uncontrollably and infiltrate organs,  Liver,  Spleen,  Bone marrow,  Lymph nodes,  central nervous system,  skin and other good tissue and go on the attack,  they attack good cells because the white blood cells cannot distinguish between self and non-self,  ie good cells and foreign invaders such as viruses and other germs.  

The only way to combat this syndrome is to wipe out the entire immune system by using immunochemotherapuetic drugs,  Dexamethasone  Etoposide and cyclosporin A..
 These so-called doctors said that they used the 2004 HLH protocol,  they did not do this as they gave our son a completely different steroid,  Methylprednisolone,  and not the  Dexamethasone as states in the 2004 protocol.
  Dexamethasone is recomended because it passes the blood brain barrier better than Methylprednisolone.
     
EBV/HLH is universally fatal if not diagnosed and treated early.

They could have stopped this!

The so-called name at the top doctor told us in an email,  which we still have,  THAT HLH WAS NOT DANIEL'S MAIN PROBLEM !!!!!

So for the "name at the top" here is a definition of universally;  " in a universal manner;  in every instance or place;  without exception."

This name at the top doctor is supposed to be an infectious disease expert and an immunologist yet this doctor did not seem to know what can go wrong with the immune system in EBV/HLH,  we can only assume that they did know,  because they knew he had this,  yet they did nothing to stop it,  ignorance is no excuse when it comes to life threatening illnesses from those who are supposed to be experts,  especially when it concerns children and teens. 

As EBV/HLH is a disorder of the infection fighting white blood cells and is treated with chemotherapeutic drugs the patient should be reffered to a haematologist/oncologist,  Daniel never seen an haematologist or an oncologist!      
 
Here is a link from almost 8 years ago which describes effective control of EBV/HLH;
Blood Journal 1999  

They could have stopped this!
 
Please read the

The Hippocratic oath


CLINICAL TRIALS

On the 1st of March 2006 the National Cancer Institute started clinical trials of the 2004 HLH protocol for primary HLH and secondary HLH encompassing the UK and Ireland, RHSC Glasgow were, and are still, involved in a multi-centre Stage 3 clinical trial assessing the very treatment plan that we maintain Daniel should have been given as soon as the physicians were aware of the confirmed diagnosis.  Daniel was in the RHSC Glasgow Scotland from 8th August 2006 to 9th September 2006 yet he was not included in these clinical trials.

WHY WAS HE NOT INCLUDED!?!?!?

 We were never told of any trials!!! Yet Daniel had the very condition that they were recruiting patients for.

Here is a link to the very trials,  start date 1st March 2006.

Scroll to the bottom of the page to find start date and the RHSC Glasgow which is participating in the 2004 HLH trials.

Clinical trials for HLH 

Another link to clinical trials

They could have stopped this! 


Daniels treatment was catastrophacally delayed for almost three weeks despite the so-called doctors knowing he had EBV / HLH..  
 
Monday 28th August ... weeks  after first suspecting he had EBV/HLH ... they told us they would need to give Daniel the chemotherapy  treatment  ...'all guns blazing 'was the term used..


 We cannot understand why they waited so long.

Daniel was given the first course of chemotherapy on the 28th August and the second course a few days later..He was given another course of chemotherapy the following week and we were told every day that he was getting better.. Sunday and Monday following Daniel  was able to sit up and converse with us and he seemed to be doing extremly well until  Friday 8th September. We noticed a few things that did not appear to be right, we spoke with a nurse about our concerns who told us there was nothing to worry about . Later that night we spoke with another nurse who refused to answer our questions and hurriedly left the room. A few moments later a doctor appeared and looked at Daniel then asked us to leave the room, he said he needed to do a proceedure which would take twenty minutes..

It was over an hour later we were allowed in, at this point a doctor told us Daniel was doing well and his blood counts and numbers were up and that he was in good condition..When we saw Daniel we knew this was by far wrong as he looked worse than earlier..On asking questions the nurses were reluctant to tell us anything saying everything was fine.. A short time later we were asked to leave the room again..Reluctantly we did so..

Around 8am Saturday morning we were finally allowed back in, only to find Daniel's condition had worsened further..

Daniel was taken from us at 10.30 am Saturday 9/09/06..

What we were not told about,, Daniel had contracted a systemic canulla related infection on Tuesday 5th September .. A hospital aquired infection...which they deny..

In a recent letter from the so-called consultant it states that HLH was not Daniels main concern and also says

'even if we had treated Daniel earlier, the outcome would still be the same.."

This same person had the nerve to say to our daughter in an e-mail that they have had sleepless nights since - wondering if they should have done XY or Z!!!

These irresponsible so-called doctors also ought to be ashamed of themselves as they knew Daniel had this condition and their delay in treatment cost our precious son his life...


As far as we/family are concerned those so-called consultants/doctors at both hospitals failed us and our beautiful son .. 

Daniel fought long and hard against this syndrome..If Daniel had been given the necessary treatment on suspicion or on confirmation of HLH we believe he would be here with us today..

For thousands of years people of all societies have put their faith and trust in healers,  medics and doctors and for this faith and trust many have paid with their lives.  In this day and age one would think things were better!  We now know differently. 

Our son Daniel did not deserve this!  He was betrayed by the very people that we trusted the most and we will never forgive them for this! 

We fully expect the medical people and hospitals to close ranks over the treatment of our son,  it has already begun,  and we are ready and willing to fight for as long as it takes, make no mistake,  we will have justice for our son and we will do our best to make sure that this does not happen to some other poor soul who will be abandoned and experimented on by the very people that society puts their trust in.
If you can't trust a doctor who can you trust?

PROTECT THE CHILDREN!

JUSTICE FOR DANIEL! 

We have seen and read Daniel's medical records and have found numerous things that we were never told about. We have so many questions as to the treatment of our beautiful son which we intend to have answered by those we trusted to care for him.



Daniel was the youngest in the family and all of our lives centered around him..

He loved going to stay with his sister Amanda, because she would let him help to feed and clean her fish tank. They done loads of things together..Amanda misses him so much.

His brother Paul would take him shopping with him and they would always bring back games and spend hours playing them..They always had so much fun together..Paul misses him so much.

His sister Elaine would spend time listening to music and playing guitar with him.. They would go to the beach together and meet up with friends. Elaine misses him so much.

We all love and miss Daniel so much..Our hearts are broken...           
  
All our love and memories of our beautiful Daniel will remain with us forever.


Daniel was always happy, he made everyone around him feel happy too. He always had a way of making everyone laugh.He had a great sense of humour and was very witty.He always liked family get togethers, parties and weddings. 


Daniel was popular at both primary and secondary school. He was liked by teachers and pupils.  Some of his friends paid tribute to Daniel by way of a book. Everyone signed it with a special mention. They all said they will never forget Daniel and that he is a legend..They all miss him so much..

Every day when he came home from school he would ask for some money to spend in the shop at the corner. He knew all the staff by name and would spend at least an hour chatting to them, he always bought a can of coke and an ice lolly. The girls who work in the shop bought a little calf for a poor family in Africa in Daniels memory. They all love Daniel and miss him. He always brightened up their day by telling jokes and funny stories.

Daniel was teaching himself to play his guitar, he would watch and listen to his favourite band Avenged Sevenfold and practice every song until he could play them. His favourite song was this:





"Seize The Day"  Avenged sevenfold

Seize the day or die regretting the time you lost
It's empty and cold without you here, too many people to ache over

I see my vision burn, I feel my memories fade with time
But I'm too young to worry
These streets we travel on will undergo our same lost past

I found you here, now please just stay for a while
I can move on with you around
I hand you my mortal life, but will it be forever?
I'd do anything for a smile, holding you 'til our time is done
We both know the day will come, but I don't want to leave you

I see my vision burn, I feel my memories fade with time
But I'm too young to worry (a melody, a memory, or just one picture)

Seize the day or die regretting the time you lost
It's empty and cold without you here, too many people to ache over

Newborn life replacing all of us, changing this fable we live in
No longer needed here so where do we go?
Will you take a journey tonight, follow me past the walls of death?
But girl, what if there is no eternal life?

I see my vision burn, I feel my memories fade with time
But I'm too young to worry (a melody, a memory, or just one picture)

Seize the day or die regretting the time you lost
It's empty and cold without you here, too many people to ache over

Trials in life, questions of us existing here, don't wanna die alone without you here
Please tell me what we have is real

So, what if I never hold you, yeah, or kiss your lips again?
Woooaaah, so I never want to leave you and the memories of us to see
I beg don't leave me

Seize the day or die regretting the time you lost
It's empty and cold without you here, too many people to ache over

Trials in life, questions of us existing here, don't wanna die alone without you here
Please tell me what we have is real

Silence you lost me, no chance for one more day
 I stand here alone
Falling away from you, no chance to get back home
I stand here alone
Falling away from you, no chance to get back home...
*****************************************

Every time we hear this song our hearts break even more..
We would give our everything just to have him here beside us  playing it now.. We all miss him so much.

LOVED FOREVER