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I am sure every parent wants their child to be able to live life to the full and share lots of fun adventures with them. My husband Lea and I are no different in what we wish for for our beautiful four year old daughter, Daisy. She is, however, a little different as she has a very rare genetic disorder called Pitt Hopkins Syndrome. It may be a clichè, but our vivacious little girl has truly been an inspiration to us. Our life is not quite how we imagined, but most definitely better for it!
Pitt Hopkins is characterised by intellectual disability and development delay. Daisy also has mobility problems and does not walk independently yet. It is a long road for Daisy to reach her milestones, but she is consistently making steady progress and is always so very happy with her achievements! We always strive to do all we can to help her along her way. This involves lots of Physio, OT and Education sessions as well as the reinforcement of them at home.
We would like Daisy to have a trike to help her improve her strength and independence as well as giving us another enjoyable activity to do as a family. A trike providing suitable support for Daisy has to be made to order from a special needs trike company and as will all items of this nature, comes at a high cost, approximately £1300.
We are also very limited in our activities by Daisy's inability to walk independently. It is such a shame that she cannot experience the countryside or anywhere that we cannot take her specialist wheelchair/pushchair. We are looking to invest in a special needs all terrain buggy so that we can widen Daisy's horizons and share more together. This also comes at a high price, approximately £1800.
We have and continue to purchase specialist equipment for Daisy and will be putting money towards this equipment too. We are planning several fundraising activities over the next few months and would really value your support.
Daisy's Mummy, Hannah....
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