Thanks for taking the time to visit my JustGiving page.
We are proud parents of two young daughters, while our 5yr old is running leaps and bounds at school our younger daughter has not been as fortunate. Our three year old Robyn, was born with a rare chromosome disorder causing a triplicating of 22q chromosome.
As parents we knew that we were going into the unknown in what genetic research is still learning, but we where not prepared for the challenges. With the little knowledge so far their is no consistency is symptoms. Robyn has global learning delay and severe reflux amongst others, but most significantly she is still a long way from walking or talking without assistance or feeding without a feeding pump directly into her stomach. Additionally she has the complication of an extremely low attention span.
First Step offers help to special needs and disabled children from birth but for many children do not get to use the service till typically much later. Julie and I like other parents of children that attend First Step Opportunity Group agree that they wish they had found the service sooner, for the benefit of their children and some some parent respite during sessions.
If it was not for the setting and the high proportion of Carers to children, and despite her complications, Robyn would not have flourished or achieve any milestones in a mainstream setting.
My family are fundraising because we would hate to see the service close as it has been a lifeline for us as a family personally and is a lifeline for others, benefiting many more families and children in a similar situation to our own.
We would really love to smash our target for their isn’t a price that can be put on this indispensable service, from the reception desk to the Carers and volunteers, our heartfelt thank you, Kieran, Julie, Erin and of course Robyn x
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