Parents hit £1.2m target for child’s treatment

family law

Parents of a baby boy with a life-threatening genetic condition have raised £1.2 million for an experimental treatment.

The boy was born last August but began to lose weight and strength when he was just eight weeks old. He was admitted to hospital where he was diagnosed with ‘mitochondrial depletion syndrome’. This is an extremely rare condition which causes the muscles to become progressively weaker. The infant is thought to be one of just sixteen children in the whole world who has it.

British doctors claimed there was “no accepted cure” for what the child has and he should therefore be allowed to die with dignity. However his parents are unsurprisingly determined to keep their son alive at any cost.

The London couple found an experimental treatment for the condition in the United States and launched a crowdfunding effort to pay for it. Now they have raised the required amount they hope they will be permitted to try.

Speaking to the BBC, the parents claimed their son “can move his mouth, he can move his hands”. They said while he couldn’t keep them open fully “he can still open his eyes and see us”. The couple “don’t feel he’s in pain at all”.

Meanwhile a spokesperson from Great Ormond Street Hospital for Children NHS Foundation Trust said the boy was “very unwell when he was admitted … and has remained under 24-hour care on our intensive care unit”. The child’s condition “continued to deteriorate” following his admission and the medical staff now believe they “have exhausted all available proven treatment options”.

The High Court is expected to make a decision about the child’s care this week.

Photo by Tom Page via Flickr under a Creative Commons licence.

Stowe Family Law Web Team

View more from this author

2 comments

keith - April 3, 2017 at 1:24pm

tough decision for the judge.
its either rule to save money or give the child a fighting chance.
i would not like to be in that judges shoes.

Alexandra Power - April 4, 2017 at 12:22am

There now is no money for the NHS/Trust to raise. No funding issues for legal consideration. The amazingly tenacious parents, with the assistance of compassionate members of the public, have resolved that issue by ruling a child’s Welfare and life to be more valuable than money, along with the fact that if there is even just one piece of medical hope available, it is more necessary to reach out and embrace it, than to prematurely accept the journey is over and never know…or worse, discover years ahead, that it had in fact strong grounds of success!

It’s not over! There is one further chance, currently at trial stage. Success is not found without trials. And the legal argument of funding has been removed from the table so is no longer a factor for any Judge to deliberate upon.

The only question here is “Do I/We make the decision to just give up and permit a Child’s life to expire, without first reaching our for every possible solution existing, and to do so when financial costs are no longer a matter of consideration” (albeit they should never be)!

The parents tenacity, along with the public response of such compassionate multitude that it enabled over 1 million of funding to gift that piece of medical hope…to give the life of a Child a final chance,…should make this a clearly straightforward decision.

Furthermore, Article 24, Health and Health Services, enshrined within The International Convention on The Rights of the Child, clearly specifies and defines this right.

Many Judges are forced to render the most agonising decisions. Decisions where there are no alternative answers out there; no Clinical Trials to avail of, no hope and often in cases where there is no funding available (albeit the Child’s Rights to avail of life and all possible treatment should not be negated with the argument of funding)!

There is a possible International medical solution. There is independent funding available.
There is no risk of being a possible “Placebo Patient” within a trial.
Whether it fails or succeeds is a moot point given that, without it, the Child will die anyway!

There’s nothing to consider here other than I hope the Crowdfunding Site have waived all their commission fees, if applicable, thereby increasing fund availability. That an Airline will donate the gift of travel for the Child and her parent(s)/siblings, and that a wealthy hotel chain will gift accommodation, perhaps in the form of a Family Suite?

There was no public funding for Malala Yousafzai. There was just the assistance of the Government in ensuring she availed of the generosity of expert UK surgeons who provided their skills pro bono, and a London Hospital who gifted her care + treatment she would have otherwise been unable to obtain elsewhere. Then she was gifted a safe harbour to reside in and has, in just a few years,given back to Society and been officially recognised for those achievements.

This sick child deserves at least a final chance of treatment in different shores, and there’s not even the assistance of the Government or NHS or pro bono treatment being requested in this case!!!. It’s been public humanity which has made her final chance a realistic possibility.

It shouldn’t even be going before a Judge!

Leave a comment