Family Matters


We spoke to Cheri from Buckinghamshire, whose 9 year-old son Jenson was diagnosed at the age of 4 with the degenerative Late Infantile Batten Disease. He was referred to the hospice shortly afterwards. Jenson’s older sisters, Lauren 19 and Megan 16, have also had the support of Helen & Douglas House through the sibling support group.


Cheri was joined in Helen House by our specialist Outreach Nurse, Shirley, who works alongside families to provide continuity of care in-house and at home, and advises other health professionals caring for children like Jenson.


Thankfully most of you reading this newsletter will not know what it is like to have a child diagnosed with a life-shortening condition and to use the services of Helen & Douglas House.


We wanted to share with you just a tiny glimpse of what the impact is on one family and why it is so vital that patients and families have access to a specialist hospice service for expert care, support and respite.


It is only because of your donations that we are able to provide this.


Thank you


Cheri started by telling us about Jenson and his condition; ‘Jenson was in pre-school and they noticed he couldn’t’ line up bricks and things like that. He also had a bit of a speech delay and he couldn’t string more than two words together. He had no sense of danger.’


Jenson is registered blind and is profoundly disabled. ‘Now there’s nothing he can do. Feeding is going to be the last thing that goes and we’re trying to keep on with that, as he enjoys his food. I have a Carer that comes in for 12 hours-a-week. In the mornings I do it with my girls, like getting him changed and bathed. Nothing is a one-person job. You need two of you for most things.’


Cheri (left) with Shirley 4


Shirley explained how the Outreach Team became involved with the family; ‘It was about 2 years ago. We went through a symptom management plan for Jenson and tweaked his medications a little.


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