Cherished Charity: From Author, Journalist & Campaigner Stephanie Nimmo

This week I'm delighted to start my new blogging series called Cherished Charities. I was at a local Mayor's event when someone from another charity said, "No one has really heard of us unless they need us, it's so hard to raise funds."  I understood. After all I was there with a charity that I loved because they were there when we needed them.  So I thought I'd create a small opportunity for people to share the charities important to them here.  And I start with a brilliant one from this fantastic person, Stephanie Nimmo. 

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Thanks so much to Stephanie, for taking part:

1. Tell us a bit about you

I’m a writer, journalist, campaigner & blogger. For nearly 10 years my blog Was this in the Plan? has shone a light on the world of disability, palliative care and end of life planning. I have tried to shine a no holds barred light on the world of caring and disability as I shared the details of my life caring for Daisy, my youngest daughter who was born with a rare, life-limiting genetic disease as well as balancing the needs of my three other children, two of whom have a diagnosis of high functioning autism.

In 2014 our world was rocked when my husband Andy was diagnosed with terminal cancer. He died in 2015 and I became a sole parent of four grieving children. Sadly a year later Daisy also died. In the space of 13 months our family of six became four.

My book Was this in the Plan? was published in September 2017, on what would have been my 25th Wedding Anniversary, it’s a memoir about living and dying well. I’m passionate about breaking down the taboo around talking about death and dying in order to be able to focus on making the most of our finite time, after all death is the only thing we have guaranteed in life!

When not writing & campaigning I escape from the challenges of my complicated life by running marathons & swimming in lakes.

2. What is the Cherished Charity you'd like to tell me about today? What do they do?

ShootingStar-Chase is the children’s hospice that Daisy was referred to when she was just a few months old.

3. Why they are one of your cherished charities?

We have no extended family nearby and we were drowning as we came to terms with the complexity of Daisy’s needs and the reality that she would probably not survive to see adulthood. ShootingStar-Chase gave us support in so many ways, respite breaks as a family, therapy and support groups for our children, hospice at home support with trained nurses who came to the house to help with Daisy’s very complex medical regimen (she was dependent 24/7 on intravenous nutrition and medication).

When Andy was ill they helped by looking after Daisy so that I could be with him for his final hours, if they had not been able to do that I just don’t know what I would have done. When Daisy died the hospice nurse came to the house and set up a cold mattress and liaised with the palliative nursing team at Great Ormond Street Hospital so that Daisy’s body could be brought home to rest just as we wanted. After a night at home we brought her back to her beloved hospice where we had so many happy memories and she stayed there for a few days until her funeral.

Now that Daisy has died the hospice provides bereavement counselling for me and is still a really important part of our lives. I spend a lot of time talking about the work of children’s hospices as they receive no guaranteed government funding yet they provide such an essential service to the most medically fragile children In the UK.

4. Are there any other charities you'd like to mention?

I also support Together for Short Lives – they are the umbrella charity for children’s hospices and children’s palliative care services in the UK. I am passionate about getting the issue of better funding for children’s palliative care on the agenda. We had a good experience of end of life care for Daisy, I know that experience is not universal. I also support the work of Carers UK as I want to challenge some of the stereotypes around caring.

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Thank you again to Stephanie for sharing her thoughts with us as part of my new Cherished Charities post series.  
You are an amazing woman.

If you'd like to meet and hear more from Stephanie, she is talking at Me Too & Co (one of my Cherished Charities ;-)) on the morning of Friday 9th March, in Twickenham, South West London.  

Stephanie's book can be bought via Amazon.  Find out more at www.stephnimmo.com or follow @StephNimmo

If you'd like to highlight a charity as your Cherished Charity - please get in touch, I'd love to hear from you.