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Lily-Mae, from Witney, was born in 2013. At two years old she was diagnosed with Rett Syndrome, which caused regular seizures and other complications. Although it took some time for her mum, Leanne, to come around to the idea of going to a hospice, she eventually visited for a look round. Today, she is now so glad she did come for that visit as we helped them both make precious memories together and Leanne got some respite from being a carer. Also, in Lily-Mae’s final hours in September 2021, we cared for and supported her whole family in a place they felt at home.

Supportive stays at Helen & Douglas House

For four years Lily-Mae would visit Helen & Douglas House on a regular basis with her mum, and sometimes with her nana. Lily-Mae’s condition meant that she was unable to walk and talk and needed help with everything, from feeding to medication, as well as moving. They had limited help at home, so the time Leanne spent at the hospice with Lily-Mae gave her the chance to be a mum, rather than carer. And Lily-Mae got the care and support she needed. And so, at the end of her life, they couldn’t imagine being anywhere else when they said their goodbyes.

During her supportive stays with us, Lily-Mae would enjoy activities and specialist equipment that she didn’t have at home. This included such as splashing about in our therapeutic pool and engaging in the light of our sensory room. She would also enjoy interacting with the other children who we care for and watching people, whilst also enjoying many naps. These may seem like daily activities for many of us, but having the support of the hospice nurses and doctors gave both mum, Leanne, and Lily-Mae the rare opportunity to relax together and make memories.

‘Lily-Mae’s condition meant that she could have had a seizure at any moment and so always needed a set of eyes on her. When we visited the hospice we knew that there would be someone there for us. They would also give me advice on where to go or who to speak to for more information to manage her care. It’s not that we would come to the hospice, and when you leave that was it, they were there for us all the time. And even after her death, they are still supporting me.’

Care at home

During the pandemic, mum Leanne and Lily-Mae self-isolated at home for many months. They had support from the hospice which helped them to cope on their own. They often liaise with our Outreach nurse, like Becky, who would visit them at home when required. Becky would visit to do blood tests for Lily-Mae so they could avoid going to the hospital during the pandemic and prevent the worry of getting covid. When restrictions eased they started to visit the hospice again for supportive stays. But, as the rules had changed in-house, mum Leanne would need to leave Lily-Mae on her own with us. She had never wanted to do this before as her full-time carer, but it gave her the momentum she needed to leave her there so she could enjoy some time on her own. And, it gave Leanne the chance to go home and have a sense of normality from being a carer for a short time.

End of life care and support

A few years before Lily-Mae died, mum Leanne had worked with our Outreach Nurse Becky to write an end-of-life plan for Lily-Mae. Her condition was stable at that time, but as a hospice, we often help to prepare families for their child’s death as part of their care plan as appropriate. Leanne always knew that Helen & Douglas House was where she wanted Lily-Mae to be at the end of her life.

Last September Lily-Mae became unwell and was rushed into hospital. Following a negative Covid test, and after a few days in hospital, arrangements were made for her to come to Helen & Douglas House for end-of-life care. Once they got here, Leanne’s family were finally allowed to come and see them, after not being able to visit them at the hospital due to Covid restrictions. With Lily-Mae settled, and everyone around her, they got her comfortable and her family said their goodbyes. Leanne spent those final moments with her precious daughter in her arms, stroking her face with a bunny teddy. Finally, she was able to tell Lily-Mae she was proud of her. Just over three hours after arriving, Lily-Mae died. With our support, she was surrounded by the love of her whole family in a familiar place that felt like home.

The Little Room

After she died, Leanne helped the care team to clean and dress Lily-Mae in pyjamas, a comfy dressing gown and her slipper socks, which she always wore. She was then moved into the Little Room at Helen & Douglas House which is a specially designed cooled room. It’s a place where children can stay with us for a few days after they have died and helps to give their families a space to say their final goodbyes. It’s a calm room, with direct access to our beautiful gardens, a real haven at such a sad time.

Lily-Mae stayed at Helen & Douglas House for five days after her death. During this time Leanne and her partner stayed in the family flat. This meant they didn’t have to go straight home, where the house was full of memories of Lily-Mae. And, it also meant, that during those five days they were able to go down and see her if they wanted to, but have the space to shut themselves away if they needed to.

‘For nearly nine years my life was dedicated to her and making sure that she was happy and safe. And then the way that she had passed away was just so quick. There was no time to prepare anything.’

With our help and support, Lily-Mae was able to get the support and care she needed during her short life. Her mum Leanne got the support she needed as a carer, and then at the end of her daughters’ life. This care continues even after a child has sadly died, as our Family Support and Bereavement Team have been working with Leanne since she lost Lily-Mae with the emotional support she needs.

Help make a difference to families when they need it the most

Did you know… A donation of around £50 could help to fund specialist outreach nurse care for a child, like Lily-Mae, in the comfort of their home. By providing specialist nursing care, in a place families feel most comfortable, you’re helping them to smile again even when life is tough.