Evelyn

EVELYN

Thank you to everyone who donated to Evelyn. Together we raised £1,443.

100% RAISED

Evelyn

Evelyn is nearly 9 years old and has been diagnosed with Weidmann Steiner Syndrome, a very rare genetic disorder.  This presents low weight gain, developmental delay, low muscle tone, excessive hair and cramping feet.

Evie is very dependent on us and other adults. Her condition affects her every day life for example, she cannot walk far and is distracted easily tends to walk through things rather than around them. Has a very high pain threshold so if she hurts herself she will often get back up and carry on without letting you know even if she has cut herself. She will often trip over her own feet as she is sometimes unstable on them.  She has no awareness of danger, has bowel problems and this can often cause social and emotional difficulties. she requires focusing and encouragement to eat and drink. She can become very frustrated when she doesn’t understand why she cannot do things. She is also still in nappies day and night as struggles to control herself.  When Evie becomes ill it can put her out for a few days. 

Evie is a very demanding little girl but saying that she is also very loving, caring, playful, a very funny character, full of life and determination, runs on duracell batteries and we certainly wouldn’t be without her. She enjoys participating in activities with her siblings and always tries her best. 

All these things make it very difficult for Evie to participate in family and school activities and this does make her very frustrated.

Evelyn
Name: Evelyn

Age: 9

Condition: Weidmann Steiner Syndrome

Raised: £1,443.81

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