Ruby’s Story

In 2017, following years of uncertainty our youngest daughter was diagnosed with an extremely rare genetic condition which has impacted on her life in every possible way.

We feel privileged to have been able to access Marches a number of years ago having never been able to successfully find respite care due to either funding cuts or lack of services.  Despite the fact that our little girl has so many difficulties didn’t stop the doors of respite facilities being closed in our faces because she didn’t have a life-limiting condition or wasn’t dependent on being tube-fed or needing to be attached to machines to keep her alive.

Ruby in a sandpit

Marches was and is our life saver.  Following years of chaos, sleep deprivation and the huge demands that our precious little girl made on us we sadly reached breaking point and, to be honest, we at times felt like the only way out was to go our separate ways.  Broken and beat we felt immense relief when just by chance we stumbled across a leaflet about Marches Family Network. 

If I was allowed to choose one word to describe Marches it would be outstanding but that one word just doesn’t cover it because it means so much more to us.  It’s like having an extended family and being part of a community where we feel supported.  Marches has meant that we have been able to spend some quality time with other siblings in our family and much needed mother and daughter time for me with my eldest who is now at university.

Marches provides our younger daughter with a safe, stimulating and caring environment where she can have fun with her peers whilst being supported by some of the most wonderful people we’ve met. Our daughter absolutely loves the play days and trips and the staff are always so genuinely happy to see her. I never feel anxious when she is there because many of the staff already have other jobs within the sector and are experienced to meet her needs fully and if not there are always plenty of other experienced people to ask. The communication is brilliant and everyone works together. It’s a community that we feel extremely privileged to be a part of.

Ruby and a Marches Family Network volunteer

Marches is our lifeline, it’s priceless and without we just couldn’t function, particularly during the long school holidays.  At times, you can feel so isolated being a parent of a child with such significant and profound needs but I always breathe a sigh of relief when I see all of the friendly staff and other parents at Marches.  It’s comforting to know that we have the support and feel that Marches is just like having an extended family.