Posted on Wednesday 3 June 2020
Thousands of families join bereaved mum who lost three-year-old son to cancer to call on government to provide urgent support to the charity who got her through it all
A mum whose three-year-old son tragically died from cancer is calling on the government to provide urgent financial support to the charity who supported her throughout his treatment and death.
Alison Cramp, a Head Teacher from London, was supported by CLIC Sargent, the UK’s leading charity for children and young people with cancer, when her son Dylan-James was diagnosed with Wilms Tumour. But the vital support she received is now at threat for other families facing cancer as the coronavirus crisis has had a devastating impact on the charity.
Since the start of the pandemic, CLIC Sargent, which relies 100 per cent on voluntary donations, has seen a 60 per cent fall in income. The charity has had to reduce the hours of 30 per cent of its staff and furlough a further 36 per cent of staff as it faces an £8 million loss of income. It comes at a time when families are more anxious than ever and need vital support from the charity.
Despite its desperate pleas for government support and Rishi Sunak’s announcement of a £750 million package for charities two months ago, CLIC Sargent, which provides emotional, financial and practical help to children and young people with cancer, has still not received any government support or financial help.
Dylan-James’ mum Alison is sharing their story in support of CLIC Sargent’s campaign to highlight how vital the charity’s work is in supporting families during the most vulnerable time. Since launching the campaign asking for families supported by the charity to sign an open letter to the government, there were more than 2,500 signatures within the first day of it being shared on Thursday – including Alison’s in memory of her son.
Alison said: “I’m supporting this letter to government and urge them to give CLIC Sargent immediate financial support because I know what a difference their social workers make to families like mine. When you’re told that your child, who is your absolute universe, has cancer, you can’t think about anything else.
“CLIC Sargent has been there for us every step of the way. The support we’ve had has been invaluable.”
Dylan-James passed away just weeks before his fourth birthday, after being diagnosed with Wilms Tumour 11 months earlier.
Alison said: “Dylan had a tummy ache and a fever and his daddy said his tummy felt hard, so we took him to A&E, and once we got there, they weren’t letting us go. Then they said the worst words you could imagine – we think Dylan-James has got cancer. Our world just stopped.
“Being told he had cancer turned our world upside-down. We were suddenly being told he’d need to have chemotherapy straight away, and then have his kidney removed, and then would start of a year of treatment. We never ever thought we would lose Dylan-James.”
However, two months before Dylan-James was due to finish treatment, his tummy started hurting again. A scan showed that the tumour had not only come back, but it had also spread to his lung and he had relapsed.
“There just wasn’t anything else they could do for him. That’s when we were told we’d have about two months left with him. We were absolutely crushed.”
The family spent time at their home and at Shooting Star Hospice during Dylan-James’ last few weeks. Throughout his cancer journey and palliative care, the family were supported by CLIC Sargent social workers Shelley and Stef.
“It was soon after Dylan-James’ diagnosis that Shelley came to visit us on the ward. She explained she was here to support us, and she was really, really helpful. She would come in and talk to me while he played, check in on us, see if we needed anything. And she did that throughout the whole 11 months of his treatment.
“She gave us information about things I didn’t know about. You can’t think of all of these things. Dylan-James was, and still is, our absolute universe, so you can’t think about anything else apart from your child’s cancer. So Shelley’s support was so helpful in such a practical sense.
“Dylan-James passed away in my arms holding his daddy’s hand at Shooting Star Hospice. Shelley visited us at the Hospice and came to Dylan-James’ funeral, which I will forever be grateful for.
“Stef has offered 1-1 bereavement chats with me, she put me forward for CLIC Sargent’s parent’s bereavement group and invited me to various bereaved mum events. It doesn’t feel like I’ve lost Dylan-James and the support has stopped, because lots of things do stop after your child passes away. People come to the funeral and then that’s it. Obviously for us, that is our reality, this heartache is just here all the time. We still look for Dylan-James every day and talk about him every day so it’s nice that the support from CLIC Sargent hasn’t stopped.
“It’s important for us to share Dylan-James’ story because people don’t want to think about cancer, or a child having cancer, or death. But this is our reality, and it will be forever. This is a heartache that is never going to go away for us.”
Helen McShane, Director of Services at CLIC Sargent, said: “Another month without support from the government has meant we’ve had to take more measures we wish we hadn’t needed to, putting our services for families like Alison’s more at stake.
“We urgently need the government’s help and so do the families that we support. With a decline in cancer diagnosis and referrals during the pandemic due to a drop in people visiting GPs, we’re concerned about an even bigger crisis than the one we are already facing.
“We want to thank Alison for sharing her experience and supporting CLIC Sargent to fight for survival and to ensure the government do not forget young cancer patients or their families during the pandemic. We really hope the government will listen to them and provide CLIC Sargent with the support we so desperately need.”
For more information on how you can support CLIC Sargent during the coronavirus crisis, visit http://www.clicsargent.org.uk/.
Notes to editors
For more information, an interview or images, please contact Jessica Browne on 077 4119 5055, or email mailto:Jessica.email@example.com.
About cancer in children and young people
Today, 12 more children and young people in the UK will hear the devastating news that they have cancer. Treatment normally starts immediately, is often given many miles from home and can last for up to three years. Although survival rates are over 80%, cancer remains the single largest cause of death from disease in children and young people in the UK.
About CLIC Sargent
When cancer strikes young lives CLIC Sargent helps families limit the damage cancer causes beyond their health. CLIC Sargent is the UK’s leading charity for young cancer patients and their families. We provide specialist support, to help and guide each young cancer patient and their family. We will fight tirelessly for them, individually, locally and nationally. For more information, visit www.clicsargent.org.uk
Note to sub editors
Please note that the name ‘CLIC Sargent’ should not be abbreviated to CLIC, and that the word ‘CLIC’ should always appear in capitals, as above.
CLIC Sargent has announced that approximately 40 staff will be made redundant in the coming weeks and several of its charity shops are remaining closed because of the devastating financial impact of the Coronavirus pandemic.