In some cases there is a treatment or even a cure these that even a few years ago would have killed the patient.
Sadly there are also cases where there is no cure or treatment and even rarer as in this case, no diagnosis.
At best they would have several different diagnoses that fit different parts of the disease in order to explain how it presents and the actual disease gets named after the patient.
That patient may be the only one to ever have it or possibly others have but failed to mature in the womb and became a miscarriage or were stillborn.
Alfie lasted longer as the missing milestones were noted and he was put on life support.
Without it he would have died a long time ago.
With Alfie, his body is attacking his brain and obliterating it completely replacing it with fluid.
it could also be affecting other organs as well but the brain was more susceptible.There has been a months long and currently ongoing legal battle between the Hospital, Alder Hey and the parents Tom Evans and Kate James about turning off the life support of 23 month old Alfie Evans
Alfie Evans has an undiagnosed, untreatable, incurable mitochondrial disease that is rapidly eating his brain and left his skull filling with water and spinal fluid.
He also has almost constant fitting which medication cannot control.
The parents claim the state is wrong to ignore their parental rights over Alfie.
He is in a semi-vegetative state, which I suspect should really be called a permanent vegetative state.
The hospital Alder Hey sought to turn off his life support which he has been on since late 2016.
His parents refused and wanted him kept on life support whilst seeking help from other hospitals including Italy and Germany saying because he had no diagnosis he should be kept alive and that somewhere else would offer him treatment.
At his last MRI scan he had lost at least 70% of his physical brain including those areas connected with sight hearing, smell, touch and taste, which put paid in reality to parental claims that he responded to their touch or voice.
Their case went through the courts, high court, supreme court who all denied it and said life support should be turned off and, as in similar cases, namely Charlie Gard and Isaiah Harstruup the ECHR refused to get involved and subsequently the children were taken off life support and they died.
The father stated that if Alfie died in a corridor or en route to wherever, he would die a hero which shows his deliberate ignorance of the facts which were pointed out to him by the court that Alfie would die messily and in a disorganized manner.
This did not satisfy the parents, the father, Tom Evans and mother Kate James who sneaked in a German doctor under the guise of being a 'friend' who allegedly examined him and proclaimed him fit to fly.
This all came out in court and the Judge was not pleased when he learned what they had done and that the doctor had not read all his copious notes nor alerted Alder Hey staff who he was and his reason for being there.
Apparently Bambino Gesu Paediatric Hospital in Rome, Italy told the parents they would be prepared to take Alfie.
They said there was no cure but the parents believed they could 'treat' Alfie.
What this boiled down to was in fact the Italian hospital keeping him on life support and doing a tracheotomy for his breathing and PEG tube for nutrition, nothing else.
Three foreign hospitals – in Rome, Milan and Munich – have offered to admit Alfie and help to diagnose him. However, the judge ruled in February that transportation to a foreign hospital by an air ambulance would be “futile” and not in Alfie’s best interests.
The father, who represented himself in court during earlier appeals understood the clinical situation regarding his son whilst refusing to accept anything that did not suit his intentions regarding Alfie.
Even during the recent appeal when he released a video to the public he says:
"Alder Hey have phoned the police to stop me from taking my son out of the hospital," he said.
"This is my son. Look at my healthy, healthy young boy who is undiagnosed, who is certainly not dying."
He added: "They have phoned the police over a child... look how innocent the boy is, look at him, he lies there eagerly waiting for his trip home.
"How can this come to this?"
It was also scary that although Alfie is on invasive intubation with his ventilator, as he cannot be weaned off it although it has been tried several times previously, his father told the listening crown that he would 'bag' Alfie he knew what to do although not being trained and that he would have a medical person with him,
What the hell is going through his head?
He would have to remove the various tubes and wires, then grab him and run whilst at the same time trying to bag him until he got to the ambulance where upon they will likely try to intubate him and bag him.
All this would rely on Alfie surviving withdrawal of ventilation,, being carried through the hospital avoiding staff, security and the police whilst having a mask over his face so they can bag him oxygen, through the crowds and into the ambulance and off.
We are talking several minutes here and we are talking Alfie dying messily and undignified in a corridor or possibly just outside.
No dignity, no pain relief, nothing except shouting and screaming, pushing and shoving.
But then his father would tell us he died a hero.
The father who seems to be the one in charge and very vocal was encouraging protests outside the hospital and threatening the staff to the end result of only the parents and 2 named family members being able to visit Alfie and the police now guarding Alfie's room.
Some protestors even went as far as invading the hospital and the PICU unit.
Hundreds stood outside with banners singing and chanting and blocking entrances to the hospital, disrupting entry, blocking roads and generally being a rent a mob.
The parents of 23-months-old Alfie Evans, currently on life support at Alder Hey Hospital in Liverpool, have engaged the support of Christian Legal Centre for the last-ditch stand to prevent their son’s death in hospital.
The father also claims that with some reduction in some of Alfie's medication, he shows signs of increased cognition, allegedly being able to cough, swallow.
Given what we know about the status of Alfie's brain and the little that remains of it, it is impossible for for Alfie to show increased cognition.
He has little is nothing left to do so.
Images were released by the parents of the mother covering her long nailed finger with chocolate and shoving it in Alfie's mouth moving it around in an effort to stimulate his taste reflex.
The father also said he had a letter from the Christian legal Center:
You have asked me to clarify whether it would be legal for you to remove your son Alfie from Alder Hey Hospital without the Hospital's consent. In Alfie's situation, that would only be practical with the support of a team of medical professionals with the necessary life support equipment.
Subject to that, I can confirm that such a removal would be lawful under English law.
Alfie is only in hospital because you, his parents, voluntarily sought its healthcare services. Alfie retains the right to self-discharge from hospital. He is not imprisoned there. Because of his minority, it is for you, as his parents, to make a decision to self-discharge or to stay at hospital.
The effect of the declaratory orders made by Mr Justice Hayden in the High Court is to make it lawful for Alder Hey to withdraw his artificial ventilation treatment, and to protect Alder Hay and its staff from legal liability for that step. It is not the intention or effect of the order to circumvent Alfie's personal liberty or your parental rights. It remains lawful for an alternative team of medical professionals, with your parental consent, to provide such medical treatment to Alfie as they professionally deem to be appropriate.
As you know, today Mr Justice Hayden made a further order scheduling the withdrawal of ventilation from Alfie for 12 noon this Friday 13 April. The legal position may arguably become more complicated if someone within the High Court's jurisdiction continues to provide ventilation after that point. However, there is no doubt that, until that point in time, it remains entirely lawful to provide ventilation to Alfie; and that can be done by a medical service provider of your choice.
For these reasons, as a matter of law it is your right to come to Alder Hey Hospital with a team of medical professionals with their own life-support equipment, and move Alfie to such other place as you consider is best for him. You do not need any permission from Alder Hay Hospital or the Court to do so.
Hope this clarifies the matter.
Christian Legal Centre
Standing with Christians for Life
Lord Justice Davis is now asking questions about the Christian Legal Centre, the organisation representing the family.
He asks: “Are there any lawyers? Are there any qualified lawyers there?”
Paul Diamond: “They’re a campaigning organisation. There may be one or two.”
He now asks a member of the legal team for the CLC to stand up and answer a series of questions. The man stands up.
Justice Davis says: “Do you have any legal qualifications?
Did you charge any fees for this advice?
Are you regulated by some regulatory body?”
He answers no to all of the above.
He does however point out that there are lawyers at the organisation.
He admits he did draft the letter.
He says he considered the order when writing it.
Lord Justice Davis asks him to sit down.
Justice Davis now points out that the letter was posted publicly even though “nobody with any legal qualifications would have written a letter like that”.
He adds “Our hearts are touched [by this case]. Anyone’s hearts would be touched. But we have to uphold the law.”
From the live updates in court
Lord Justice Moylan: “In April 2018, the father visited the hospital with an air ambulance and foreign medical staff.
The father had a letter with him from a man, not a lawyer, which said it would be lawful to remove Alfie from the hospital and take him to any other hospital as he chose.
“The letter, which was disseminated on social media, said ‘as a matter of law, it is your right to come to the hospital with a team of medical professionals with life support equipment and remove him.
“You do not need any permission from the hospital or the court to do so.
“It led to a confrontation in which Alfie was involved. The police became involved.
“The letter gave false advice because the previous decisions in court in this case have directly addressed what should happen and that the parents’ wishes are not determinative.
“It also ruled that removing Alfie would be ‘irreconcilable’ with Alfie’s best interests.”
The parents once again lost their appeal and were denied permission to appeal to the Supreme court although the parents can appeal directly.
Apparently the appeal will be based on the previous Supreme court judgement being wrong!
The father came out after the judgement and publicly slammed the hospital claiming a nurse fell asleep in the room rather than looking after Alfie whilst the father was denied of sleep, claiming evidence of mouldy tubes etc.
We only hear one side of it as the hospital has to respect patient confidentiality.
The father in the video also said the day and time the support would be removed which went against the court judgement that it should be kept private to respect Alfie's dignity.
Clearly Alfie's dignity does not apply to the father.
I still think the dad thinks his son will grow a brain and live to 20 or 40 and go swimming in a pool . Those are his words.
Tom Evans has said he believes his son could live until he was 20 or even 40 years old.
He fought back tears as he told a court last month:
“All I see is Alfie and a life. I see scans showing deterioration, but I see a boy with a life who looks at me.”
Even Mr Stephen Knafler QC, Alfie’s parents’ lawyer, said Alfie may only survive “a few more months” if transferred to a hospital abroad for continued ventilation.
He accepted that hopes of a cure
“seem to fly in the face of medical evidence”
that Alfie’s condition was irreversible.
But he said:
“They are fighting for a few more months abroad to continue to explore options.
He may die in the battle, but that would be a hero’s death.”
All they will do in Italy is give him a tracheotomy and a PEG tube to keep him ventilated and fed.
They may treat what ever issues crop up such as pneumonia.
They cannot treat his underlying brain condition let alone cure Alfie.
All they will do is slightly delay the inevitable.
The parents are looking for a treatment for the untreatable, a cure for the incurable.
I suspect they have visions of Alfie returning home a normal boy, this is not going to happen.
The father is in complete denial referring to Alfie as his healthy, healthy boy.
If he was healthy he would not be in hospital.
He is anything but healthy.
His brain has pretty much all but disappeared and i believe a new scan would reveal even more having disappeared.
On the outside he does look healthy, all the damage is inside his skull.
Just because he looks healthy on the outside doesn't make him healthy on the inside.
At what point would the parents decide to let him die?
6 months down the line?
Remember the father told us if things didn't work out in Italy after 6 months they would go to Germany.
Poor Alfie would be being moved from pillar to post enduring who knows what pain and discomfort, likely dying in a corridor messily and with no peace or dignity.
With this new appeal they will appeal the court ruling then go to the supreme court then the ECHR and we do the dance again.
All this is is delaying tactics.
It also concerns me greatly the distancing language regarding his son, referring to him as the boy or the child.
This is unexpected.and concerning.
It is also concerning that he is willing to let his son die messily and with no peace or dignity in a corridor calling Alfie a hero and having a hero's death.
This is not the language or behavior of a caring father to his dying son.
Yes despite what his father says, his son is dying and has been for a long time, all that is keeping him alive is the ventilator, invasive ventilation at that.
They tried several times to wean him off it and each time he had to have it reinserted because he could not breathe without it.
I also doubt he takes breaths on his own, if he did he would likely have a cough reflex which he doesn't.
The father in particular is a danger to his son and personally given what we now know i would ban him from any contact or visitation with his son as i would not be surprised if he took matters into his own hands, disconnected Alfie and tried to do a runner with him the the 'ambulance'
Such is his denial in the face of all the evidence.
One moment he is praising the staff and hospital to the skies and next he is insulting and demeaning them.
His son is still alive due to the fantastic care and dedication of the staff, Staff who become almost family to the children they care for.
They want the child to survive, to become healthy.
They do their damndest with every fibre of their being to work miracle and it hurts them as much emotionally as it does the parents when their patient for whatever reason doesn't make it.
They don't want to have to turn off life support, they don't decide that they want a bed let's kill a child as some protesters seem to be saying.
They only decide to turn off life support when there simply is no hope of recovery, when everything they have tried hasn't worked.
Sometimes, crap happens.
There is no miraculous recovery as seen in the closing moments of a movie or TV show.
This is real life and sadly sometimes, there is no happy ending.
The father seems prepared to take things into his own hands, desperately searching for someone or something that will delay the inevitable.
He wants a diagnosis, perhaps in his mind a diagnosis means treatment although he seems to accept there will be no cure
He called out to the Prime Minister, The Queen, even the Pope to help save his son.
The Pope did make a short statement about Alfie and his parents.
It was simple and completely neutral on the case, as he should be.
I also doubt any medical personnel would be willing to lose their medical license by aiding and abetting a child abduction and if Alfie died en route possibly manslaughter charges.
I also doubt any pilot would be willing to lose their license for aiding and abetting a child abduction plus having said child die on board.
That could also be manslaughter.
Perhaps his dad thinks the Pope will perform a miracle and Alfie will be healed.
Nope, not going to happen.
Perhaps we will see a UK version of Jahi McMath, brain dead since December 9, 2013 and kept 'alive' on a ventilator etc in an apartment as her parents claim she is not really brain dead and to have the death certificate issued to them in order for the hospital to release her body to them in CA in order for them to move her to NJ revoked.
The father will keep looking for excuses to keep his son on life support and if his son is still 'alive' after Germany he would look for somewhere else.
The child who was Alfie died a long time ago.
All that remains now is a bag of flesh and bones in the shape of Alfie, no thoughts, no feelings, no movements, the barest of the barest basic reflexes that go right back to the primordial, controlled by the spinal cord almost like the Lazarus effect seen in bread dead patients.
Will his parents still continue to fight for treatment when his brain stem vanishes and Alfie becomes brain dead from which there is no recovery?
I think they would.
Denial can be a very powerful force.
Perhaps they think they could take him home and care for him there, they have no idea how hard it is to care for someone profoundly disabled needing everything done for them 24/7, the sheer expense of having 24/7 ventilators running, the cost of nursing staff.
What would they do once the money runs out?
What about power cuts?
Hopefully the parents will let samples be taken in order to learn what caused it, whether it was inherited from his parents or simply something rogue.
Doing so could mean next time, if there is one, the doctors could try a different tack, doing investigations and trying medication that could if caught early enough stop or delay the onslaught against the brain, giving the child and parents a bit of extra time.
I think however that the way the father has been acting, he would refuse any such request, perhaps even an autopsy just to spite the doctors.
It would achieve nothing except the loss of valuable information about how the disease worked, how the brain cells were attacked by seeing cells in different stages from clean to almost gone, perhaps where it started, it's route, if it was random destruction or if it followed certain paths.
Seeing how it affected his senses etc, what he may have been able to feel.
I read of people saying one of their loved ones had something (insert disease etc here) and they lived to X amount of years.
A popular one is with Jahi McMath where people say they had a relative who was brain and they are alive X years later, when what they were in was a coma/persistent vegetative state from which can and do recover from sometimes back to full health.
They confuse that with brain death from no one has ever recovered.
You can't always compare like with similar to with certain diseases especially brain death/coma/PVS/stroke or even people born with parts of their brain missing.
Alfie was born with a brain and his body destroyed it, it will never regenerate or grow back and i think people don't realize this.
Someone needs to sit the parents down and ask them what they think the future for Alfie would be like?
What do they think will happen a month down the line, 3 months, 6months, a year?
What are their expectations of Alfie for the future?What do they think he will be able to do?
What do they think will happen to Alfie's brain?
Show them the scans and if needs be do a new one to show how little brain he has left.
If needs be and if he isn't already, make Alfie a ward of court removing all parental responsibility for Alfie from his parents and then put Alfie out of his misery.
The Italian hospital needs to state that there is no cure nor treatment for Alfie in their hospital or anywhere else.
They need to now state they are not prepared to accept Alfie (as well as the German hospital the father was talking about)
They need to state that as sad as it is, all the medical reports show Alfie is beyond anything they can offer and that it is right that he now be allowed to pass in peace and shut his damn parents up once and for all.
As long as the parents think the Italian hospital or any hospital will take him, they will continue this farce.
Remove the options and they will have to let Alfie have the dignity and peaceful death he deserves.
It is now time for this farce to end with the parents doing the same steps of the same dance they have done before and getting the same result as before which is to lose their appeal.
It is time they they gave Alfie the peace and dignity he deserves and to let him go.
It will hurt, it always does but it is the kindest deed we humans can offer to something in pain or with no chance of recovery.
It is something we do to an animal, dumb animals they say.
It is a kindness and if we don't we can be prosecuted for cruelty
Yet with humans , intelligent animals, we deny that very same mercy
What is the difference?
I am pro euthanasia.
Should i be diagnosed with a terminal illness or i become a PVS then i want the option of deciding when to go and if unable to make my decision then i have a living will and a DNR.
I don't want to be an empty shell, i don't want to die slowly and in agony because the morphine no longer works and they can't give me any more, lying there with no dignity, no peace.
This is my choice.
Others may decide they want every attempt done to stay alive, regardless of the end result such as profound disability, severe brain injury etc.
Some decide for their own reasons and peace of mind, others to spare their loved ones from grief by delaying the inevitable, hanging on at all costs.
For me it is practical reasons , if I am dying why delay it?
If I am going to end up existing in a fleshy shell, no thanks give me an injection and let me go.
We as humans can make a choice as to when we have had enough.
When we have terminal diseases that cause intense agony, that morphine no longer controls as to give more would be to kill them.
If the patient is of sound mind and knows and understands the consequences of their decision and has discussed this with two independent doctors or a panel of independent experts then i would have no problem with them being allowed to choose when and where.
They have the time to get their affairs in order, do what they want to do as they now have a target.
Knowing they can decide when, patients would be happier, their loved ones may disagree for a while but if they know what will happen to their loved one as the disease progresses it can be a relief almost knowing their loved one won't have a painful undignified death.
We don't complain when someone decides to refuse further treatment, take Barbara Bush as an example.
It is harder with children with terminal illnesses such as cancer.
Some children, regardless of age are old enough or mature enough to decide if they want to continue treatment which would leave them suffering pain and discomfort, stuck in a hospital on drips and tubes and missing out on life and fun or, calling it a day, going home and making the most of what time they have left with their family.
They are happy with their choice, for a while they can have a normal life.
In other cases such as with Charlie and Alfie, they are unable to make their voice, their choice heard which is why an independent guarding speaks for them.
Sometimes we have to make the hardest most painful decisions for a loved one in order to gives the kindest, peaceful and dignified result.
Reading the court judgement shows the thought that went into the case of Alfie, the experts consulted, the medical reports.
It makes for harrowing reading.
Alder Hey v Evans Court Judgement 20th February 2018
In this case the parents should have but one choice, hard as it will be.
They can offer Alfie mercy.