Emily’s Story

Becky and Phil Hamilton of Accessible Holiday Escapes got in touch with CDG UK to share their family’s story.

Emily was diagnosed with CDG Type 2 in 2015 at the age of 3. She was born at full-term and everything progressed as expected at first. When Emily was about 7 or 8 months old we began to get more concerned about her physical progress as she wasn’t sitting up, rolling or developing any fine motor skills. Other than that she seemed very healthy and happy. Emily was referred to the community paediatrician at around 12 months old, and since then physiotherapy, speech therapy, occupational therapy and much more has been ongoing. Emily underwent investigations in the form of blood tests, scans, and assessments by different specialists at various hospitals. Ataxic Cerebral Palsy was initially suspected.

Emily sat up at 14 months old, crawled at 18 months old, walked using a rollator aged 2, and walked independently at around 2 and a half. For a long time she needed lots of help and support when walking because of her poor balance and still needs help now. although is doing far better than we ever hoped!  Emily is very sociable and happy, and also very determined and stubborn! Emily has learning disabilities, and spent 4 years in our local mainstream school with 1:1 support, and has just moved to a resourced provision within a mainstream school with a specialist teacher and staff.

In 2018 we began writing a review-style family accessible adventures blog (we also have an 11 year old son Sam) www.theflyingbumblebee.com to share our days out/holiday experiences and became part of the large disability community online. We then realised it wasn’t just us who struggled with finding accessible family holidays. As Emily became older and our needs became more specific, we found that​there seemed to be very little information or search options on-line for accessible and child-friendly properties, and it was difficult to find the access information we needed. As a family of 4 it’s really important to us to find somewhere that will be right for all of us, but unexpected internal steps, missing stair gates, or open gardens mean it suddenly isn’t a holiday any more!

We eventually decided to take the plunge and launch our own website. The accessible tourism industry is growing in the UK so we felt it may also be successful as a business, as well as helping travellers like us search for accessible holidays. We launched www.accessibleholidayescapes.co.uk in June 2019 and have had an amazing response. We already have 70 properties listing with us and more due to be uploaded; and have had a really positive response from users of the site. We won a Theo Paphitis Small Business Sunday award recently, and were filmed by ITV Wales news talking about our story and the website, and were featured in the Daily Post newspaper. 
We also hope that sharing our story will raise awareness of CDG. We have yet to meet a professional (other than the team at BCH) who have worked with a child with CDG before, so Emily is usually their little guinea pig! Our unexpected CDG journey has eventually led us down the path of accessible tourism and given us a totally different outlook on life. Like any parents of a child with a disability some days can be difficult, and the appointments, paperwork and therapy programmes are never-ending; but we try and maintain some sort of happy family life with accessible adventures thrown in!

Do you have a story to share?

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