My Weak Muscles

When Rosie was first diagnosed with a neuromuscular condition we felt
isolated, alone and scared. We were desperate to connect with other families going through a similar thing to build a support network.

An amazing nurse who we love dearly called Dominique from the fantastic charity Lifetime connected us with a family nearby and we soon arranged to meet.

In the summer of 2016, Iain, Rosie and I met Karen, Iain and Issy at a cafe in a lovely garden centre in Congresbury. From the moment we first met them, it felt like we’d known them for years. Issy is 3 months older than Rosie and as Karen and Iain shared their story of the previous couple of years it was like hearing much of our own story on replay.

It was so amazing to meet a family in person who just get it. The emotional anguish, the mental torment, the daily challenges, the scary outlook – yet the positive, amazing, brave little girls who are oblivious to their situation and get on with life without a care in the world. We felt the same pain, discussed our hopes and dreams for our baby girls, watched them interact and a friendship was born.

Issy is funny, bright and playful, but at 17 months of age she was diagnosed with a serious life-limiting condition called Spinal Muscular Atrophy (SMA).

SMA is a genetic neuromuscular disease affecting nerves responsible for muscle function. Although classified as rare, SMA is the leading genetic cause of death of infants and toddlers, with approximately 95% of the most severely diagnosed cases resulting in death by the age of 18 months. Children with a less severe form of SMA face the prospect of progressive muscle wasting, loss of mobility and motor function.

Unlike Rosie who had weak muscles from birth, Issy faces the cruel prospect of losing all the physical abilities she has worked so hard to gain such as moving, eating, lifting her arms, even breathing.

The SMA Trust is dedicated to funding medical research into SMA and I hope you will join me in helping to raise money for this fantastic charity.

On March 12, 2017 I will be joining Issy’s brave and inspiring mum, Karen, along with ten of her family members and friends in ‘Team Isabel’ to run the Bath Half Marathon.

I really hope that you will donate whatever you can, however big or small, to help find a cure for SMA and help Rosie’s beautiful friend Issy.

Click here to visit my fundraising page or click the button below.

Thank you in advance,

L x