We are two parent carers of fragile, profoundly disabled children who for the last 5 years; have been carving a support network for the parents by the parents of disabled and special needs children and their families in and around the North East of England. We received our official Registered Charity Status in January 2020, cementing us in the world of providing a clear, consistent and transparent service. We have strived to become reliable and a safe place for parent carers to come to feel listened to and appreciated. We listen to what parent carers need, what gaps we feel are missing around our children’s needs, but also what the parent needs and ensure the siblings are included in everything we do and feel just as precious and special. Our aim is in two parts, yet is perfectly simple, firstly:
- To advocate strength, courage and friendship; and
- To making special memories with special families
We want to be the person we needed at the beginning of our journey, we want to be there to ensure no other parent feels they are alone, like they have the only disabled/special needs child and no-one can ever understand how that feels. We want to share knowledge to empower that parent, to gift them information, tricks, hacks, diversions, appropriate training and signs posts in the hope of reducing stress, anxiety, worry, loneliness, confusion and many, many wasted hours and sleepless nights.
Knowledge is power in our life, if you can find someone who has already done it and tried on the t-shirt, that saves an awful lot of battles and struggles. To find someone who already knows all the hospitals, familiar with medication, technical terminology and terrifying medical equipment and interventions.
A particular passion of ours is simply to help make ever-lasting special memories. It’s a difficult reality that a large percentage of our children have life limiting conditions, a lot will not reach adulthood, including our own children, and we have seen the impact this has on the whole family, on mental health and simply having the ability to get up and get dressed everyday can seem daunting and often a waste of energy. Therefore, we fundraise all year round to create safe and inspiring events to encourage these families to live in the safety and security of their own homes and put their trust in us to create often one-off events and experiences, to give the opportunities that money cannot buy and often tasks that simply feel out of reach.