Cian's Kicking Cancer

Cian's Kicking Cancer

About my blog

This blog will be updated by my mummy and daddy to let everyone know how I'm doing and tell you all about the fantastic support that I am receiving from lots of very caring charities.

We are in the process of creating a charity called Rainbowfish that will campaign for more awareness of the rare and aggressive cancer that Cian has been diagnosed with, to encourage research into new effective treatments and potential cures.

It will also be used to as a platform to offer a network of advice and support for other parents in a similar situation.

We are extremely grateful to our family, friends and supporters for fundraising and sending us messages of encouragement.

We also have a dedicated Facebook Page.


No Brainer!

Cancer AwarenessPosted by Daddy Case Tue, April 19, 2016 23:36:17

As I start to compose this blog post, it is a little more than 24 hours since the conclusion of yesterday’s Brain Tumour Debate at Parliament.

The debate was tabled due to a successful e-petition created by Maria Lester, whose brother Stephen Realf lost his battle with a Brain Tumour at the age of 26 after being diagnosed at 19.

When Cian was diagnosed towards the end of 2015 the petition was already gaining traction. Although Cian’s primary tumour was attached to his spine; this was unusual for this cancer type which almost always targets the brain. Plus, Cian’s MRI scan had shown that seeds of the cancer had impregnated his brain. Therefore when we were educated of the unfavourable outcomes associated with a brain tumour diagnosis, and the lack of clinical trials and research in this area, it was clear that we should add our voice to this campaign.

Even though it is unlikely that any positive action resulting from a change in Government policy would benefit Cian, I felt motivated that other children should not have to suffer the same fate.

Once the petition had closed, I then felt compelled to contact my MP in order to secure a Parliamentary debate; and once the date had been set I had to lobby once more to ensure that Cian’s situation could be highlighted.

Although my constituency MP could not act on behalf of Cian, due to him standing down as an MP to pursue a campaign to become a Welsh Assembly Member, he had secured the services of Nick Smith, MP for Blaenau Gwent to represent him.

I asked Nick to focus on how a cancer diagnosis to a school child can impact small communities, especially when it exposes the horrors of cancer to the friends of Cian. But also how positive community support can be.

When I arrived at Parliament it was evident that this was a popular debate, and my first priority was to secure a place in the public gallery; which I managed to do. It would not have been ideal to travel to London and have to watch the debate via a TV screen in an adjoining room. Fortunately the trip only cost me less than £20 thanks to very reasonable coach prices and hotel reward points.


When we were escorted into the Grand Committee Room (where the debate was taking place) it was already quite full with MPs, and there was standing room only in terms of the public gallery.

It was mentioned on a number of occasions during the afternoon that this was one of the best attended debates that Parliament had seen within that room in recent times. That is extremely encouraging to gauge how much support there was for this cause.

Sir Edward Leigh who chaired the first part of the debate even had to point out that there would be a time limit of 4 minutes allocated to each MP who wished to speak to ensure that everyone gets a say.

The debate was opened by Helen Jones, MP for Warrington North and chair of the Petitions Committee, who delivered an extremely impactive speech clearly outlining the issues and recommendations that the committee had identified in their report.

I would encourage everyone to watch and listen to her speech (or read) via the links at the end of this blog post.

The MP speeches that followed were factual and impassioned, mostly from a position of personal experience or encounters with constituents who had been affected by brain tumours.

I am incredibly grateful to Nick Smith for his contribution.

There were incredible statistics that demonstrated that funding for brain tumour research was clearly inadequate, and that lives were being lost and careers were being blighted as a result.

Only 1% of Government funding for cancer is allocated to Brain Tumours even though it is the biggest cancer killer to those under 40; and while other cancer survival rates had increased by 50% in recent years, Brain Tumour rates had only improved by 7% over the same period.

I am glad that I made the decision to attend the debate, and I sincerely hope that momentum gathers pace to ensure that after the words, action swiftly follows.

LINKS

Link to the original petition and associated documents

Link to the debate footage

Link to the Hansard text of the debate

Link to the WalesOnline article



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