Lilly's Story

Lilly's Mum, Katharine, explains the complexity of Lily's condition and the importance of The Hamlet in their family's lives.

"Lilly has a genetic disorder that, as far as we are aware, nobody else in the world has.  As a result, we don't know what the future holds for Lilly.  Her genetic deletion has caused quite a few issues, most of which can be summed up as Global Development Delay.  She started walking at aged 2 years and 9 months and now, aged 3, she is just starting to say a few words and understand simple instructions when used with visual aids.

Lilly also has Macroglossia - an enlarged tongue.  Despite surgery, she still has trouble eating and drinking.  She has to be watched constantly due to a choking risk as she puts everything in her mouth.  She also has sleep, hearing and visual problems.

We were introduced to The Hamlet by our specialist Health Visitor when Lilly was 1.  We have attended the 'Little Bees' groups for sensory and musical development.  These are wonderful activities that are both suitable for Lilly's ability and needs, and they are a safe place for her to explore and develop.  It was also great for me to meet parents in a similar situation and the staff at The Hamlet, who have been a great source of information, support and a shoulder to cry on.  We have also attended 'Signalong' classes to help with communication with Lilly.

The Hamlet has made such a positive, important difference to our lives.  The money that the public kindly donates will ensure that it continues to do so for my family and many others. Thank you."

Katharine

 

Set up a regular donation securely and easily via The Hamlet's Virgin Money Giving page and make a difference to more families like Lilly's.

Find out more about The Friends of The Hamlet regular giving programme.

Share with