Story
Thanks for taking the time to visit my JustGiving page.
Our beautiful son Daniel has a very rare progressive and degenerative condition called San Filippo Syndrome Type 3B. He is now 14 and thankfully he is mostly still able feed himself, very active and has lovely eye contact. Although he is non verbal he will often communicate with a lovey smile and a range of sounds and non verbal gestures.
Daniel is a happy little boy and very gentle and tactile. He has 2 sisters, Isabella 9 and Sophia 16 who both love him very much and as a family we provide him with a safe and loving home environment. Daniel requires 24 hour care such as with toileting, feeding and also at night time as his sleep can be intermittent and disturbed.
Julia's house have been there over the last 8 or so years and continue to provide such loving care for Daniel and real emotional and practical support for us a family. The lovely days Daniel has at the hospice and how the nurses and play workers regularly look after him at home have really enriched all our lives.
This will be the fourth Bournemouth Marathon that I have run for Julia's House. It is always such a special day and although I enjoy the personal challenge of trying to run the marathon in my best time, it is such a great way to help Daniel and all the other children who benefit from the care and support that Julia's House offer.
So, thank you for all your support and if you can help me reach my target that would be very much appreciated, particularly if you have also kindly supported me in the past.
Thank you,
Edgard
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