For me, these words sum up my experiences as a Mum of a child with unique challenges.
The isolation has often been all consuming, the frustration has led to extreme anxiety and the courage has been thrust upon me thanks to a special little girl who looks at me with so much love in her eyes that I will always fight for her.
Ella created the fire in my belly to keep battling but what saved my sanity was not looking at my beautiful girl who needed me. What saved my sanity was knowing I am not alone in feeling alone.
Through social media platforms, Google searches, websites and face to face groups, I have been able to build connections with others who are just like me. Parents, carers, family members and the superstars who keep going, through hospital visits and investigations, all unite through their isolation.
Emma, Mum to the incredible Matthew, plus her team continue to work hard to ensure other families feel hope and connection despite the isolation. The Matthews Friends Parent Forum brings families together. It holds out a virtual hand and wraps around a powerful family hug.
The forums and support networks help families like mine connect with other familes walking the same rare pathway to ensure we never feel alone, despite the isolation.
Through these forums, Ella and I were able to connect with and meet another GLUT1 Deficiency Syndrome family in person! The relief felt by two parents who have been able to share a journey and two little girls who were finally able to play with someone the same is priceless. These smiles were created because of charities like Matthews Friends who bring families together.
If you are reading this and are feeling alone, overwhelmed or unable to cope, please reach out. Don’t ever suffer in silence.
Emily and Ella
Special thanks to Lou and Grace for the wonderful memories and photographs
Please, if you are able, support Matthews Friends to enable them to continue to support families who are feeling isolated. It really does turn lives around.