"It’s really hard to prepare a child with autism for what’s to come"
Mark Suttling was 19 when he died having lived with cancer since childhood. St Helena was only a short part of his journey. His mum, Samantha, continues to be supported by the hospice and here she shares a small part of her story:
“Mark loved all things Marvel. We had a Marvel themed funeral with colourful t-shirts. Some of the boys had marvel ties and one of the girls had a dress made from Marvel material.”
Mark was diagnosed with a rare cancer in his liver just before his 11th birthday. He had an intensive course of chemotherapy and afterwards seemed to be doing well. But two and a half years later, he suddenly got a surging pain in his side one day. There was a tumour in his left lung. He was 13 at the time.
Over the years the cancer came back and the 5th time it was behind his heart.
“The second cancer hit us worse than the first because at the end of it you think great, back to normal life. But when it hit us again we didn’t see it coming.
“The whole survival of being a human being is that you have this thing and you have to get through it. There’s not too much time to sit and cry about it.”
Samantha’s youngest child Joseph is autistic. She said the brothers had a strong bond:
“Mark wanted to start his own charity for children with autism. He said the worst thing he could think of was having Joseph’s life with autism - having all this going on in your head and not being able to communicate it. He thought that was worse than anything he was going through. He was a fantastic boy.”
Julie Eke, Community Counsellor from St Helenastarted visiting the family in 2015.
“Julie came initially to give us all counselling but Mark being Mark declined the offer… he didn’t want to talk about it.”
Since Mark’s death, Julie has been working with Joseph more, having built up trust and familiarity. Samantha explains:
“What I think has helped is that he knows her very well. Julie knows the real Joe well now.
“It’s really hard to prepare a child with autism for what’s to come. He did know Mark was ill and was going to die, like we’ve had guinea pigs die. At that time Julie was there for me and he’d seen her a lot. Now she works with Joe too.”
Mark died at home on 26th November 2016.
“We marked his 20th birthday by letting some balloons go on the beach and had some of his friends round. It will be our second Christmas without him but it seems like the first because it was all very new last year.
“Joseph wants to raise money for St Helena. Joe is firmly fixed now; if you ask him what he wants to do when he grows up he says ‘make people happy that have cancer’. It’s good because he wants to help others. Mark’s definitely got a hand over his life.”
To contact the St Helena Fundraising team, please telephone 01206 931 468 or email email@example.com , Monday to Friday between 9.00am and 5.00pm.
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24 hour advice: SinglePoint 01206 890 360
SinglePoint is a 24/7 advice and support helpline which helps to coordinate an individual’s care with the hospice. SinglePoint also works alongside other healthcare services such as GPs, Community Nurses or Specialists.
To contact a patient at The Hospice please find the address and telephone number below. Phone calls can be made to patients at any time of the day or week. You can contact Inpatient Services 24 hours a day, 7 days a week.
The Hospice, Myland Hall, Barncroft Close, Highwoods, Colchester, C04 9JU
Telephone: 01206 845 566
You can contact The Hospice in the Home Team Monday to Friday, between 9.00am and 5.00pm on:
Telephone: 01206 845 566
Tendring community team
Telephone: 01255 221 222
You can contact the Joan Tomkins Centre (Colchester) Monday to Friday between 9.00am and 5.00pm on:
Telephone: 01206 848 163
Fax: 01206 752 245
You can contact the St Helena Tendring Centre (Clacton) Monday to Friday, between 9.00am and 5.00pm on 01255 221 222
Tendring Centre Postcode for Sat Navs: CO15 1EU
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If you, or a member of your family has a life-limiting illness and would like to discuss whether St Helena care services can help, you can contact the SinglePoint telephone service 24 hours a day, 7 days a week on 01206 890 360
To contact the St Helena Bereavement Support team please telephone the bereavement helpline: 01206 984 274, Monday to Friday, 9.00am to 5.00pm
The Learning and Development Centre is open Monday to Friday between 9.00am and 5.00pm and can be contacted on 01206 851 560
For more information on the St Helena Service User Group please contact Chair, Ken Aldred on 01206 751 397
To contact the Lottery team please call 0800 285 1390 or visit the website here, Monday to Friday between 9am and 5pm.
If you would like to write to or visit the Lottery team, the address is: Your Hospice Lottery Office Unit 6 The Atrium, Phoenix Square, Wyncolls Road, Colchester CO4 9AS.
Feedback, comments and complaints about St Helena care and support services may be made verbally or in writing to: Director of Care, St Helena, Myland Hall, Barncroft Close, Highwoods, Colchester, CO4 9JU. To speak to a member of our team, call 01206 845 566