SAM Tooze had only been married a few months when she was diagnosed with MND – but it has not stopped her helping others with the crippling condition.
At the most exciting time of her life, when she had hoped to be making plans to start her family, she instead faced a devastating, terminal diagnosis and a future filled with uncertainty.
Determined to face her diagnosis head on, Sam and husband Chris, made the heartbreaking decision not have the baby they longed for, instead focusing their attention on each other, and their relationships with their family and friends.
Sam told The Observer: “We decided not to have our own children. It was a massive part of my life, always wanting to have children, and for Chris as well. That was tough. But I’ve got an amazing relationship with my nephew and niece. They are both incredible with me and they never treat me any differently to anyone else”
The decision was not made lightly, and Sam and Chris went through a series of counselling sessions, both alone and together.
“After that, we went away for a week, and that’s when we really spoke in-depth about how we felt. Thankfully, we both felt the same. It was the biggest decision of our lives.”
Sam now devotes much of her time to supporting others facing MND and helped set up her local MND Association support group, the Coventry and Warwickshire group as well as a new Rugby group.
As the volunteer group leader and someone living with MND, she understands the importance of local support.
Matthew Cobble, head of volunteering at the MND Association said, “It’s always truly inspiring when someone living with MND volunteers with the association. They have lived experience and a deep understanding of the impact MND has, so are able to work with their local community in unique ways. Sam’s dedication is remarkable.”
MND is a terminal neurological condition which affects the brain and spinal leaving people unable to speak, eat or even breathe. The MND Association supports people living with the disease across England, Wales and Northern Ireland and is the biggest charity funder of MND research in the UK.
The condition has been much in the news in reent years after rugby legends Rob Burrow and Doddie Weir shared their diagnoses and their subsequent efforts to raise awareness and funds for research into the disease.
Visit www.mndassociation.org for further details about the charity.
