Mum says thanks to hospice for ‘magical moments’ with her son
PUBLISHED: 08:27 19 June 2019 | UPDATED: 08:27 19 June 2019
A mum has paid tribute to a children’s hospice which has helped her make special memories with her son Elijah.
Elijah Hodges, from Clevedon, was born with a rare genetic disorder called Apert syndrome, where his skull bones fused and prevented it from growing normally.
When he was 18 months old, he had surgery to fit bone distractors to give his brain space to grow but he contracted a pneumococcal meningitis infection which has left him with a string of health issues including epilepsy, osteoporosis and more.
His mum Kaddy Thomas says Children's Hospice South West (CHSW) has been a lifeline for them, giving them many 'magical moments' they will forever treasure.
She said: "I remember our first visit to Charlton Farm vividly.
"It was like our world slowed down and softened for the first time in years.
"Inside, there are eight child-friendly rooms with accommodation for families too.
"There's a sensory room for chilling out, a spa bath to ease stiff joints and muscle spasms, playrooms, soft play areas, and even dedicated teen-only rooms.
"Despite the sadness of the children and young people at Charlton Farm having life-limiting conditions, happiness was - and always is - palpable in the air.
"That was 10 years ago. Since then, Charlton Farm has become part of the fabric of our lives.
"Most years, Elijah has been able to have 12 to 14 planned overnight stays at Charlton Farm.
"We quite often celebrate him being discharged from hospital with a respite stay at the hospice.
"Usually, one or two members of Elijah's care team can come to Charlton Farm with him but this can be flexible.
"I have the peace of mind of knowing that his care can be covered by in-house staff who know about tracheotomy care.
"I've realised that I don't always stop to appreciate just how special Charlton Farm is and how many magical moments it has given me and Elijah.
"This blog is about giving a fraction of the love back that has been given to us over the years."
Kaddy has written a blog about the support she has received from CHSW to mark Children's Hospice Week which runs until Sunday.
You can read Kaddy's blog at www.elijahshopeforapert.org/blog
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