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Living with the unexpected

Like all new parents, when your child is born you expect that they will be perfect, beautiful and happy.  When Bella arrived, this all seemed true.  Two months in, our hopes were shattered as her developmental progress slowed.  We started on a journey that has been fraught, frightening, exhausting, challenging but through it ultimately we have a different unique child who tugs at the heart strings and can, like all children, be very difficult when she wants to be.  Our dream of normality crushed, the focus is now on the tiny achievements, the bubbling laughter from within her, words that sort of seem discernible and what makes us and her happy.

Bella was diagnosed with severe Fascioscapulohumeral Muscular Dystrophy, a progressive condition which means that she is in a wheelchair and is in constant need of adult supervision and care. Bella’s disabilities also mean that she has to have a feeding tube, finds it difficult to talk and is on a ventilator overnight.

In 2010, the strain was almost too much to bear but Noah’s Ark Children’s Hospice came along when we knew we were drowning and they threw us a vital lifeline.  Over the last three years, the warm, caring people at Noah’s Ark have given us access to services and support and enabled us to share the burden of care, giving us some much needed respite.  Noah’s Ark also stepped in to support Bella’s siblings, Ben, Olivia and Alexander and helped to assuage the guilt we had about not having enough time or energy to spend with them.

I decided I wanted to do something to raise awareness for the charity and the really essential work the care team do, as well as to raise funds for the hospice.  A close friend Bex and I hatched a plan to stage an Art Fundraiser with no experience of holding such an event but a determination to take on the challenge.  Plans are well-advanced with great support from artists and local schools.  We are however still looking for artists who would be willing to donate, people happy to sponsor and celebrities willing to draw an animal, sign and donate it to be sold at the charity auction.

Where and when?

Art will be displayed in The Original Gallery at Hornsey Library, Crouch End, London N8 for the whole of December.

There will be a viewing afternoon followed by a private evening viewing with charity auction in the Original Gallery on 14th December

Who to contact?

Ellie Northam

Twitter @EllieNortham

M: 07775 552134

E: [email protected]

Bex Davies

Twitter @bexxyd

M: 07903 130086

E: [email protected]

About Noah’s Ark Children’s Hospice

Noah’s Ark Children’s Hospice supports children and young people with life-limiting and life-threatening conditions, and their families living in the communities of Barnet, Camden, Enfield, Haringey and Islington.  If you would like to support Noah’s Ark Children’s Hospice or find out more about what they do, please call T: 0208 449 8877 or visit their website at www.noahsarkhospice.org.uk

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