Our Darcie is one in a million. She has been through a lot of struggles with her health over the years, starting before she was even born. Darcie was diagnosed with spina bifida at the 20 week scan. Darcie was born prematurely at 29 weeks, and immediately was in NICU, then was diagnosed with hydrocephalus and required a VP shunt inserted into her brain, she required surgery asap but was too weak to go at birth she spent a few months in NICU growing, with ups and downs along the way Darcie got strong enough for back and brain surgery but when she got to theatres she suffered a cardiac arrest. Her hydrocephalus was at the point the surgeons said we need to try again because it could’ve killed her. After recovering from the cardiac arrest Darcie managed a full day in theatre and had her back closer and VP shunt fitted.

From birth she has always relied on oxygen and ventilation and being tube fed. Darcie came home from hospital after 9 months for end of life care, but Darcie is now 7 and life hasn’t been easy for her but she is always smiling and laughing. She’s had serious scares over the years most recently was diagnosed with bowel disease and had surgery last year leaving her with a stoma but we are so thankful Darcie is with us. She’s a true fighter. We want to give Darcie the best life we can, our home isn’t suitable for Darcie as a wheelchair user, as she’s getting bigger it’s really difficult to manage safely.

Darcies OT in 2021 did an assessment and referred Darcie for the Disabled Facilities Grant with her recommendations as to what we would need to make the home suitable and future proof for Darcie which is so important for her dignity and independence at home. This included bedroom extension, storage room, wetroom, specialist bath & stretcher which is roughly £10k, widening of door ways, level access through front door & back door to a level play area & strengthening of the ceiling for hoist. Hopefully with work complete it’ll change all of our lives. The grant as great as it is doesn’t fund the whole work, and the work won’t be completed without funding from us which is really difficult to comprehend and manage. As well as the build itself the finishes of the work such as flooring for all the rooms affected and Darcie's adaptions themselves decorating & blinds all need to be sorted outside of the grant.

Darcie is full of fun, she loves music, the beach and socialising! She is a real dare devil! She deserves a safe space at home with her family. ❤️

Thank you for reading our story, any help towards completing the work for Darcie would be is really appreciated by us all!