Emily’s Story: “Whilst praying for a future, we also had to prepare for the worst”

Everyone who met Emily was instantly captivated by her bright smile and inquisitive eyes. At 17 months old, Emily was diagnosed with Rett Syndrome, a debilitating neurological condition. Sadly, Emily died at the age of 3 after receiving round the clock support from her care team.

Emily’s story is one that her father Adam shared with us. Adam was inspired by his family’s life with Emily to become a trustee of Together for Short Lives in 2019.

Emily’s quality of life was paramount

Her family found writing an advanced care plan (ACP) was crucial, although it was one of the hardest things they had ever had to do.

Through parallel planning, they had the reassurance that when the devastating time came to say goodbye to Emily, everything would be managed with her comfort at the centre.

Giving Emily a voice

The family also knew that she understood everything going on around her, despite the physical challenges of her condition. Even back in 1966 Dr Andreas Rett told parents of children affected by Rett Syndrome “To look at their eyes. The eyes are talking to them. I’m sure the girls understand everything”.

Due to the complexity of Emily’s condition, the family understood that they might not have long with her, which is why they felt it was so important to give her a voice through eye gaze technology and AAC. This massively improved her quality of life. Adam described that choosing an outfit, activity or book was so important to her, and she was able to communicate with them until very shortly before she died in 2019.

Emily passed away on 21st March 2019 at Naomi House Children’s Hospice snuggled in her parents arms. The care and support of various services and charities throughout Emily’s life and beyond continues to bring them a huge level of comfort. Emily’s death has left a huge hole in their lives, but the love she left behind lives on in everything they do.

Emily’s family received support from a whole host of services, local hospices and hospice at home teams during her short life. These included:

• Jessie May Nurses
• Naomi House & Jack’s Place
• Julia’s House
• The Rainbow Trust
• Sebastian’s Action Trust
• Rett UK

There are no limits to the support that families like Emily’s need from children’s hospices. More and more families need the help of children’s hospices, and the hospices need your support to continue. Getting the right support can make a lifetime of difference. And that’s what we are here for.

Emily’s family friend Emily Blackledge and her daughter Ruby created a very special song and video for Emily.

Percy Pig’s Dreamland Ball

On 9 November 2021 Adam and Amy, Emily’s mum and dad, were our special guests at Percy Pig’s Dreamland Ball – a special event to raise lifeline funds for our work with seriously ill children and families. Speaking at the Ball, Adam shared Emily’s story:

“One thing that our beautiful daughter taught us in her painfully short life is never to underestimate anyone. Emily couldn’t use her voice, so she spoke with her eyes. She couldn’t move, so she moved other people with her smile. She didn’t let her disability hold her back, and she found other extraordinary abilities.

“Emily received the most incredible care from a whole range of services including children’s hospices and a variety of health professionals in our very special NHS. Without the care and compassion of these individuals we would not be standing today, nor would have Emily received such a gentle, calm, and dignified death.

“This may sound very odd to those that have not experienced the death of a child, but Emily’s death could not have been any more perfect. She was snuggled between her mummy and daddy whilst we all slept, Amy and I even shared the same dream of Emily singing and dancing, free from the bounds of her broken body.

“We were gently awoken by the caring nurse who told us that Emily has taken her final breath. As Emily passed through the veil of life it was almost like the room was filled Tinkerbell’s fairy dust. At this exact moment, Emily could not have looked any more perfect, like sleeping beauty awaiting a magical kiss from her Prince Charming.

“There are many unsung heroes that thread throughout our family story and our life with Emily, and we are all here to support one of them tonight. Together for Short Lives are here for families like mine, and the thousands of other families facing the unimaginable – a life without their beloved child. Whether it was the resources Amy and I accessed to help inform the worst types of decisions any parent should have to make, or knowing there was a compassionate person on the end of a telephone, we knew Together for Short Lives were there for the whole family, and that support is invaluable.”

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