The story behind the charity

MARGOT FLORENCE FOUNDATION

Creating empowering experiences for profoundly disabled children and their families

In memory of Margot Florence Lowndes Miller

25/12/07-20/12/15

MARGOT

What words would we use to describe her? Gentle and fragile, yet incredibly spirited, courageous, and wholly dependent. For eight years she filled our lives and for eight years she fought a very brave battle. Margot Florence Foundation has been set up in her honour and loving memory to help children who fight similar battles and those who care for them.

Margot was born in 2007 and, at twelve weeks, was diagnosed with developmental delay and epilepsy. Despite many attempts at treatment and numerous hospital visits, Margot was never officially diagnosed with a specific condition. But, as the years passed, it became increasingly apparent that her ailment was profound.

By her fourth birthday, we were beginning to come to terms with the fact that she would never walk or talk. You find yourself staring into what seems like a hopeless vortex when you realise everything you ever wanted to give to your child cannot be given as those things hold no meaning in his or her world. It is a deeply painful experience we hope no parents ever have to face.

It would be easy to write about all the heartache and pain that Margot’s life involved. But, that would not be doing justice to her. That would certainly not give you a proper impression of her and what she gave us back. She had a spirit that was relentless and a deep desire to communicate with the world around her.

Our problem was, while we could see that desire in her, we could hardly relay our thoughts to her. She seemed to be unaffected by all the usual forms of communication we knew and used. Thus began our journey of learning alternative means of understanding our daughter and finding ways in which she could express herself.

One of the major roads into communication was through sensory stimulation and music. Margot’s response to music was outstanding and her enjoyment of multisensory experiences was clearly visible. We are not talking about flashing lights and fancy equipment; just the simple use of the human voice, a piano, a bunch of dried leaves or a bowl of cold sand.

Communicating with Margot in this fashion allowed her to access and explore the world around her. She could properly experience the little but important thing in life we all take for granted. Margot could figure out various tones, respond to various singers and above all, recognise pieces of music that Alex had composed.

To many, Margot was simply a child they could not interact with. But, to those who took the time to develop special communication methods she was a little girl who loved to laugh, smile and interact with the world around her. Any effort expended in seeking a connection with her was very rarely wasted.

Two people that transformed Margot’s life were Jeremy Harrison (now a lead practitioner in multisensory communication for disabled children) and Kelly O'Leary (a West End singer and founder of Jump) who were immensely inspired by her. The dedication they showed in developing ways to communicate with Margot was extraordinary. However, the real revelation was the way Margot would respond to Kelly’s singing.

Margot’s appreciation of Alex’s compositions and Kelly’s singing has shaped the purpose of the Foundation. We have since discovered that it is an enshrined human right of children to be given an opportunity “to participate fully in cultural and artistic life”. For children like Margot, such participation is not straightforward. Nevertheless, it is even more important than for ‘normal’ children. For many, this is their sole means of communication with the world.

With this in mind, our mission is to encourage and support artists from a range of disciplines to make work for, by and with children with profound and multiple disabilities; to offer those children access to arts and culture in its truest sense; to create work that reflects their perspective and enables their unique take on the world to be seen and shared with those around them.

This is our ultimate goal – one that we will need to build up to gradually. In the short term, we want to provide funding for Jeremy and ourselves to guide parents, siblings and carers in the development of alternative methods of communication with their differently abled children through drama and music.

This would give families and carers the ability to nurture stronger relationships with the children, creating a stimulating and gratifying environment themselves rather than relying on outside agencies and support services.

Of course, to achieve any of our goals we need funding. We are aware that in current times, there are a myriad of worthy causes clamouring for funding and we of course understand if you are committed elsewhere. However, if you would like to make a donation, we would be immensely grateful.

Thank you so much for taking the time to read this. We look forward to your support.

Together we can enrich the lives of these children no matter how short.

Alex and Claire Miller