Story
On 14th December 2009 my niece Eva Anson was born in York hospital. We don’t know why, but after a healthy, straightforward birth and her first happy feed with her Mum, Eva developed complications, which led to brain damage. She had cerebral palsy and was profoundly deaf, she had no gag reflex and was unable to swallow, which meant that she needed frequent suction,she was fed by a tube directly into her small intestine and the part of her brain-stem that recognized night from day had been affected, so that it was rare that she slept for more than two consecutive hours.
My sister, her partner and her two teenage children’s lives were turned upside down as baby Eva’s life was held in the balance. It was a dark time, an exhausting and emotional time, but with her family and with the help of the team at the Specialist Care Baby Unit at York Hospital, Eva made it through those first few months and was finally allowed to come home.
This was where the really hard work began for my sister and her family. Eva was a beautiful little girl, but with very complex care needs and what we knew to be a life-limiting condition. Her health had to be monitored continually and her 18 medications altered accordingly. Her breathing was always compromised due to the lack of gag reflex and consequent dangerous build-up of fluids and she continued to be fed by tube into her small intestine.Someone had to be in the same room as her 24/7 and as she didn’t travel at all well in the car, this meant that my sister was effectively housebound. It was difficult to juggle the needs of all the family and Eva’s older siblings had to adapt too.
It is surprising how little support there can be for families who are caring for children with complex medical needs. Socialising becomes difficult to impossible and parents can soon feel cut off from the rest of the world at a time when the whole family desperately needs support. This is when my sister discovered the amazing place that is Martin House Children’s Hospice, Boston Spa, near Wetherby.
Martin House Children’s Hospice is such a wonderful place.It offers specialist palliative care for children and young people with life-limiting conditions from diagnosis who live in West, East and North Yorkshire and the Humber. That care is extended to the whole family and continues throughout the life of the child or young person and beyond for their family. They offer such a wide range of care and support which is available 24/7, including music and art therapies, planned respite care, emergency care, end of life care, counselling and bereavement counselling, clinical research and education. More than anything, their wonderful staff make Martin House a warm, welcoming, stimulating environment, where people like baby Eva and her family were able to relax, if only for some short respite care. Eva died at her home on 10th November 2010, three weeks after my healthy baby Tashi was born at my home. The medical staff at Martin House guided my sister and her family through the final stages of Eva’s life and after she died, Eva and the family transferred to Martin House, where they and any visitors were looked after with great care and generosity until Eva’s funeral, which they also helped to arrange.
Six years on and I’ve not stopped thinking about Martin House, its wonderful staff and the seemingly limitless care that they offered Eva and her family. They were the light, supporting the whole family, especially at the end of Eva’s life and beyond, helping everyone to cope that bit better.
Martin House provides its services free of charge, which you can imagine is incredible to any family in need of its support, but it needs to raise £5 million annually to run these services. As my Tashi turns 6 years, I’m heading out to Nepal to climb Ama Dablam, a beautiful mountain in the Khumbu in the Everest region. It’s 6856 metres high and involves technical climbing and all the constraints that working at altitude brings. This is an enormous challenge for me, far beyond anything I’ve ever done and for my husband back home looking after our three children for a month, an enormous challenge for my family too. I want to dedicate this challenge to my niece Eva Anson and to raise as much as I can for Martin House Children’s Hospice. Every penny raised will go directly to Martin House.
You can follow my progress on Ama Dablam on Tim Mosedale’sblog (friend and expedition leader) http://www.timmosedale.co.uk/ama_dablam/ama_dablam.htmand occasionally on my facebook pages. I head off this Friday 11 November, the day after Eva's 6th anniversary and she’ll be with me all the way.
And you can find out more about Martin House, the services it offers at http://www.martinhouse.org.uk/
Thank you for reading and thank you for any money that you are able to donate to make the lives of children in Yorkshire with life-limiting conditions and their families that little bit better.
In case you think that you've read this all before:
Last year I set out on 6 November to climb Ama Dablam. I previously worked in Nepal for 10 years as a trekking guide and all I ever needed was an occasional paracetamol and the odd bit of micropore tape. Last year, however, I stepped off a pavement on my first night in Kathmandu and managed to sprain both my ankles, tearing ligaments in both. It seems that this is a particularly difficult thing to do - don't try it! My expedition stopped before it even started. It's taken 8 months to rehabilitate my ankles and longer to raise funds to return. In the spirit of Eva, I don't want to give up. Many of you were kind enough to donate last year. In fact you raised nearly £1000. You are amazing. That money has already gone to Martin House. I'm now doing my best to raise the remaining £2000. Anything that you can spare will go directly to Martin House and will be greatly appreciated by me, my family and the Children's Hospice. Thank you.
In case you are wondering - donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the Martin House Children's Hospice - this saves time and cuts costs for the Hospice, which means more time and money towards caring for those in need. Thanks again, Sarah