My name is Martin Balestri and i am the father of Ella and would like to share the following story with you....

My name is Ella

I was diagnosed with Sanfilippo Type B Syndrome at two years of age. Sanfilippo Disease is a Mucopolysaccharide storage disorder, also know as Mucopolysaccharidosis Type III. There is currenty no cure and the condition is denenerative and sadly i will have a shorter life expectancy, please visit www.mpssociety.co.uk for more information.

I live with my mummy but get to stay at the wonderful Maomi House Hospice overnight during some days during the week. www.naomihouse.org.uk.

I also have carers from Julia's House Hospice www.juliashouse.org that come and look after me during the week at home. The staff are fantastic.

I am really enjoying myself at the moment and have been on some fantastic holidays and i even got to meet the Duchess of Cambridge recently when she came to visit Naomi House. You can see the duchess above having a chat with me.

My daddy has decided to walk 62 miles from London to Brighton in June to raise much needed funds to try to find a cure for this horrible disease. If you would like to sponsor him then please do.

Thank you.

Ella xxx

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