Parent Carers Story 1

As a mum of 6 year old twin girls, one of my daughters has Worster Drought Syndrome which is quite rare. Worster Drought Syndrome is a type of cerebral palsy that affects the muscles around the mouth and throat causing difficulties with swallowing, feeding, talking, dribbling, crying and coughing. 

Many children with WDS have learning difficulties, including understanding language and have behavioural difficulties. Poor concentration skills and hyperactivity are particularly common. 

My daughter had a feeding tube from 9 months old when it was discovered she was silently aspirating. This required me to gain training on how to look after her needs, she was a late walker and did not develop her speech until she was almost 3. Just before she was 4 years old the tube was removed as she was able to safely swallow, however does still require supervision.

She also has global development delay with low fine and gross motor skill, so does require support with every day tasks such as dressing, washing, cleaning her teeth. 

She is a strong willed little girl and happy when she is doing what she wants to do! It can be exhausting for me physically and mentally with all her daily additional support, which I do share with my husband but he does work full time and long hours.

We have found it stressful during the lock down, being out of her usual routine at school makes her behaviour more challenging. Her twin sister does not really understand about her sister’s difficulties and additional needs. I have recently heard about the Young Carers Group as part of the Carers Trust Solihull so think as she grows up will be good for her to perhaps meet and share experiences with other carer siblings. 

I personally have found the CarerTrust Solihull to be very supportive and informative. It is certainly helping me through some of the more challenging times of being a carer mum.

I have also met some other carer parents on a lovely trip out to the theatre which I enjoyed very much. So glad this support is accessible in my area. 

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