Story
Thanks for taking the time to visit Connor’s JustGiving page.
Connor is 4 years old, he was born with a 'Genetic Alteration Variant of Uncertain Significance', labelled ‘HIVEP-2’ which means the doctors can’t officially diagnose his condition because there just isn’t enough known about it right now. There are currently only 23 children in the world recognised by the NHS to have this alteration. Getting this far has been a long and difficult journey and as this condition is so rare there are still a lot of uncertainties for Connor.
Connor is setting his own path, doing everything his own way. He is now using Makaton, self defined gestures and some verbal cues to communicate. Connor has a great understanding of using his wheelchair already, but still continues weekly physiotherapy and training to develop his strength in the hope to stand freely and walk by himself one day. We just take everything one week at a time, looking back at how far he’s come in amazement and looking forward with hope to how much he can achieve.
Connor needs a lot of specialist equipment, adaptations to his home and additional support. As he grows we want to be able to support Connor with extra equipment, treatment and therapy to enable Connor to reach his full potential, we will use any funds raised for him to support him in any way we can at home, outside and in an educational environment.
7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects. If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objects, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.If you have any questions at all please do not hesitate to call the family support team on 01892 535525.
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Thank you so very much for reading and visiting Connor's page.