Please help this child from my town get life saving treatment.

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  • Please help this child from my town get life saving treatment.
  • Premier Icon Flaperon
    Subscriber

    Just bear in mind when donating money that this treatment is not available in the UK because there have been no controlled trials to demonstrate increased survival rates over conventional radiotherapy.

    Without the treatment he will not live, it’s as simple as that.

    This is not true. The parents are correct to say that proton therapy delivers a lower radiation dose to non-targeted tissue than conventional radiotherapy. But conventional radiotherapy is effective – what we’re talking about here are side effects from the treatment. However, if they are delaying radiotherapy treatment in the UK in the hope of receiving proton therapy in the USA – and I’m not saying they are – then the point becomes moot if the cancer grows or metastases further.

    I cannot imagine being in the situation Alex’s parents are in, and cannot think of a more sensitive way to put this.

    crocodilian
    Member

    Hi, you may have seen this on the news.

    Alexander Novakovic’s parents needs to raise £255.000 in less than 2 weeks in order to get their son proton treatment that’s only available to them in the States. He has a medulloblastoma, a brain tumour. Without the treatment he will not live, it’s as simple as that.

    He is currently in the hospital where I work and the whole town of Aylesbury has rallied around to support him and raise awareness of his plight. It’s been quite amazing witnessing everyone getting involved.

    Donations are currently up to approximately £90.000, so we still have a fair way to go. Please help.

    Official page

    Here’s more info (sorry it’s the Mail): Daily Mail

    Donate here: Just Giving

    Facebook page: Facebook

    Herman Shake
    Member

    In the UK there is currently only one type of radiotherapy offered which is in the form of X-ray radiation. The problem with this form of radiotherapy is that When an X-ray enters the body, it emits a tremendous amount of energy at the point of entrance. That’s why X-ray treatment leaves people with a burn at the treatment site. As the X-ray continues into the body, it continues to release energy. As long as the cancer tumor is somewhere in the path of the X-ray, it receives some of that radiation. But so does the healthy tissue all around it. The tissue damage that results from this type of radiation therapy can cause serious problems for the child if the tumor is in a particularly sensitive area like the brain, and spine. It can also cause irreparable organ damage, hearing and vision loss, seizures, loss of limb control and tremors, severe learning difficulties, fertility and growth problems.
    ?
    Proton-beam therapy can avoid this type of damage. Protons are positively charged atomic particles, and they have tremendous energy but also tremendous mass. They’re easier to control than X-rays: They slow down as they encounter body tissue. Protons can actually be set to release their energy at a specific point in body. By altering the proton beam’s energy level, which determines its velocity, doctors can send it to a very particular tissue depth. At that exact depth — at the precise location of the tumor — the protons release their energy. There’s very little radiation damage to the tissue surrounding the tumor. Proton therapy is ideal for tumors that are oddly shaped and/or situated in areas that can’t handle much radiation exposure.
    ?
    Proton treatment is not widely available. The equipment required for proton-beam treatment is massive and expensive. Particle accelerators don’t come cheap! Although considered a mainstream cancer treatment for medulloblastoma, the NHS has yet to install these machines and does not provide funding for treatment abroad. Children are top candidates, because X-ray radiation treatment can be so damaging to a body that’s still growing; and children and adults with inoperable tumors in the brain or on the spinal cord are good candidates.
    ?
    Proton therapy patients have fewer side effects because it only kills the cancer. But traditional radiation therapy works like a bullet, damaging healthy tissue as it enters and exits the body.

    For the cost of a few pints you could make a big difference. With any treatment there is no 100% guarantee and if Alexander can be helped with less chance of something like acquiring a learning disability, recurring seizures or loss of neural function then I happily have donated.

    Fingers crossed for him!

    cranberry
    Member

    Done, and I hope that many more people donate to give this child a chance of leading a long and happy life.

    crocodilian
    Member

    Thanks, people!

    whimbrel
    Member

    This suggests NHS will fund overseas treatment. I sure they must have applied, but just in case…
    NHS – Overseas PBT

    Good Luck!!

    bencooper
    Member

    Cases like this are always heartbreaking – but I don’t know why they are saying that the NHS won’t fund this treatment abroad – according to this, 79 people were treated abroad last year, funded by the NHS:

    http://www.specialisedservices.nhs.uk/info/proton-beam-therapy

    What’s more likely is that doctors decided that it wasn’t really the right treatment for him. The problem with a privatised healthcare system like that in the States is they’ll happily take your money for a treatment that’s not really all that useful.

    Premier Icon convert
    Subscriber

    and does not provide funding for treatment abroad.

    I agree with Ben – horrible situation to be in for a parent who you imagine would do anything to give their child the best chance. But that quote from their website Herman posted above does not correlate with the statics in Ben links to from the NHS. You just have to wonder if they can’t get NHS funding because there is none or because his doctors don’t feel it is appropriate.

    It might say something about me being cold and cynical or the state of the media and everything on the internet not being considered trustworthy but I’d feel happier supporting if his UK doctors were being quoted stating this was the right treatment and it was such a shame it was not available here. If I was the parent of that child who felt this might be the magic bullet I might be prepared to bend the truth a little too.

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