Our beautiful daughter, Emmy, was diagnosed in December 2014 at the age of 4 months as having had a stroke on both sides of her brain and a ruptured aneurysm. This resultes in her having various diagnoses including spastic quadriplegic cerebral palsy, microcephaly, epilepsy, cortical visual impairment, and laryngomalacia. Her condition meant that she struggled with almost every aspect of life- she was unable to control her movements, could not see and needed support with her breathing. She was prone to chest infections and became increasingly oxygen dependent as she grew. We were told that her condition was life-limiting, and she quickly required round-the-clock care and support to ensure that her needs were always met and to make her life that little bit easier. 

Through discussions with hospital staff, we decided early on that we would care for Emmy at home as much as we could. We didn’t want her to spend her short life in hospital attached to machines. Emmy would decide when her little body had enough and we would respect that. We did so much research and we knew that biology could not be beaten here, not this time. Her quality of life was always at the forefront of our minds. And it is at the forefront of an amazing organisation who helped us through the most awful time in our lives. 

Emmy was referred to Children's Hospices Across Scotland (CHAS) in 2015, fairly soon after her diagnosis, and she was accepted despite none of us really knowing what her exact prognosis or life span was to be. When she was one, we started to go to Robin House for respite, and we would stay there with her too. After spending some time there and feeling so supported and cared for, we decided that, when the time came, this would be where Emmy should spend her final days. 

From the minute we arrived at Robin House, any negative preconceptions that we might have had of Hospice care were blown out of the water. We found that it was a place of warmth, fun and laughter. We were led to see that there was still joy to be had, even during the most difficult and dark of times. Going there meant that we could enjoy family life without the everyday medical regimes and sleepless nights- the staff attended to every aspect of Emmy’s needs when she was there. What was great was how well they linked with her NHS doctors. It was seamless. The amazing nurses and support staff helped us to create memories with our daughter that we will have forever. It’s hard to describe the significance of a place like this using words; it really is the most special place we’ve ever known. 

On Monday 2nd April 2018, Emmy was due to go to Robin House for a respite visit. That weekend she had become very unwell so we called Robin House to ask if she could be seen by one of the wonderful doctors was soon as we arrived. Emmy slept the whole journey to Balloch. She was seen that afternoon almost as soon as we got there. She was so poorly and for the first time ever, we were advised not to leave the house. But Emmy, as she often did, rallied and she seemed to improve over the next couple of days. It wasn’t to last, however, and our little girl’s health quickly and rapidly deteriorated, and we were then told the news that we expected but almost never believed would come, that she appeared to be nearing the end of her short life. 

Over the next 5 days Emmy battled like the little warrior she always had been, and throughout it all she received the most amazing and compassionate medical and nursing input that you could ever wish for your child. We were all also supported immensely by the staff there too- the love, care and attention was second to none. Our meals were all prepared, and the nurses attended to every aspect of Emmy’s medical needs making her as pain free as possible. All we had to do was to be with her and spend whatever time we had left with her doing what we needed to. We made memories.... we sang to her and read her stories, washed her hair and her little body for the last time, and kissed her and told her how loved she was. Our wider family were all able to come and visit her and her brother and sister and cousins all played in the playroom, popping in and out to give kisses whenever they wanted to. 

Our beautiful little girl, aged just 3 years and 8 months, took her last breath at 11.20am on 9th April. We had the door open to the beautiful gardens, so she could feel the breeze. Our wonderful nurse, Jane, for the last time turned off her oxygen machine and it was so peaceful. All we could all hear were the sound of the birds. Just as we had planned, Emmy took that last breath while in her mummy’s arms and holding her daddy’s hand. Then there was the heaviest downpour outside that you could imagine. It was the peaceful ending that we had hoped for her after such a long, hard battle. She was no longer in pain. 

The wonderful support continued and we all stayed on- Emmy too- at Robin House until the day of her service. Being able to spend that time with her undoubtedly helped us to process her death. There was no rush to say goodbye. We sat with her, kissed her, read to her and held her hand. We were  guided through every part of the process of arranging what needed for her service, and we also had our own nurse every day who helped make sure we were as OK as we could be. If we needed anything, it was attended to- nothing was ever a problem. 

On leaving Robin House for the final time, ten days later, the staff who had cared for our girl had lined up outside to honour and say goodbye to our brave little girl: it was unbelievably touching and this will always be a very precious memory of the most wonderful place. 

CHAS continue to be a part of our journey in so many ways and we remain involved with them in varying capacities. We are so grateful for their support now and in the future, and remain determined to give back to them. This is why we are choosing to aim to raise £50000 for CHAS. 

CHAS rely hugely on charity funding to raise £10 million per year just to run their two Children's Hospices in Scotland. They are currently only reaching 1 in 3 families in Scotland who have a child with a life limiting condition. We agree with them that every family who has a child with a life-limiting condition should have their support. We want to do our bit to say thank you for the love and support they give Emmy, and to us. If we help even one family to receive the care that we did we will have succeeded. We can only do this with the support of our family and friends and we want to say thank you to you all for helping us to help others during the hardest of times 🌈

Thank you so much for your support. 

Claire, Kenny, Harris, Tilly and Emmy's Army xxx

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OUR FUNDRAISING EVENTS:

Emmy's Auntie Carron, Dan and others most recently took part in CHAS organised Sahara trek in 2020... and no double there will be more bubble-rushing, kilt-walking, marathon running, and other events along the way soon. 

Our wonderful friend Pam McClune hosted a cake and coffee fundraiser and she’s arranged a raffle after managing to get some amazing prizes! And the toddler group in Lenzie Parish held a sponsored Toddler Toddle around Lenzie raising an amazing £328- Tilly was last, of course, preferring to stop and beat a stick off of everything along the way! 🌟 

In April 2018, Emmy's amazingly impulsive and determined auntie Louise cycled the Hebridean Way - 180 miles- in aid of CHAS. Claire's aunt and her friends successfully completed the kilt walk! Then in May 2018, Emmy's Auntie Laura and cousins Katie and Lucy, and her Auntie Mel, Uncle Gary and cousin Thea, completed the Bubble Rush. Our friend Lesley Kapoor also completed the Stirling half marathon and her work have kindly donated a significant amount of money to CHAS. 

On 6th January 2018 our fabulous friend Mandy had a fabulous 50th birthday party- and instead of birthday pressies she asked for donations to CHAS on behalf of Emmy. Mandy handed over £2000 recently to them. We are so grateful xxx 

On Saturday 22nd October 2017, Claire held a ladies night at the local Scout hall. The prizes that were donated were just amazing, and the Rock'n'Roll bingo went down a storm- £3493 was raised at the night alone and, added to Kenny's run total, meant that Claire won the Mission Impossible prize of a table at next years Fawkes-y Ladies lunch!

On Sunday 1st October 2017 Kenny ran 10k along with friends and work colleagues from Craigmarloch Nurseries in aid of CHAS :)

On Saturday 18th Feb 2017 Emmy's uncle Grant turned 5-0!!! Instead of gifts he has kindly requested donations to CHAS via our fundraising page.

On Sunday 2nd October, Kenny ran 10k along with friends and work colleagues from Craigmarloch Nurseries- Isla, Lorna, Nikki, Damien, Jordan, Sean, Gregor, Greg, Gordon & Kirsten- in aid of CHAS

On 29th May 2016 Emmy's Gran, Cathy, ran the Edinburgh Marathon. Then, on 26th June 2016, Emmy's Auntie Carron and Uncle Greg abseiled 165ft from the Iconic Forth Rail Bridge onto the beach below.

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