Lily-Mae, from Witney, has been coming to Helen House since 2017. Born in 2013, Lily-Mae was diagnosed with Rett Syndrome in 2015, which causes regular seizures. It took some time for Mum Leanne to come to Helen & Douglas House, but she is now glad she did as it gives her the chance to be Mum, rather than carer and to get support.
Lily-Mae’s Mum, Leanne, first learnt about Helen & Douglas House when her friend, who sadly passed away in 2000, came here for end-of-life care. After learning about Lily-Mae’s diagnosis in 2015, it took some time, but she came to look around Helen & Douglas House in 2016. At that time she was not ready to stay at the hospice, but a year later in 2017 they ‘bit the bullet’ and came along for a stay, and have not looked back.
The reason they love coming to Helen & Douglas House is that it is a like a ‘second home’ for them both. They have limited help at home, but when they come to the hospice, they can both enjoy spending time sitting with other children, interacting and seeing what it is like for them.
Lily-Mae’s condition means she is unable to walk and talk and has to be fed through a feeding tube. Visiting Helen & Douglas House and having support whilst staying means so much to Leanne. ‘It’s about not having to worry about feeding her, and about meds and stuff, as they deal with it all. Also, if she does have a seizure or something, they are there, and they can give you advice on where to go or who to speak to when you go home. It’s not just you come here and that’s it. They’re there for you all the time.’
Helen & Douglas House gives Lily-Mae the chance to enjoying specialist facilities like the therapy pool, sensory room as well as people-watching and even sleeping. These may seem like ‘normal’ activities for many of us, but just having the support of the hospice nurses and doctors gives both mum and Lily-Mae the opportunity to enjoy their time together. Lily-Mae cannot have a bath at home only a shower, so she loves splashing about in the therapy pool with Mum Leanne or one of the Helen & Douglas House nurses when she comes to stay at the hospice.
Mum Leanne says ‘She has epilepsy, so seizures can be worrying because may only take one serious seizure to do the worse. She can’t eat very well, so she has to have her feeding tube.’
Despite Lily-Mae’s condition, Mum Leanne says ‘she gives beautiful smiles and beautiful cuddles and her eyes tell you a million things. That is why coming to Helen & Douglas House is great, for the memories and the little things. One day memories are all we are going to have left. It’s about treasuring everything and taking photos as it’s all I am going to have one day.’
Lily-Mae has been staying at Helen & Douglas House on several occasions this year. To make the most of their time there, Mum Leanne spreads out their annual allocation evenly throughout the year so they can regularly attend and both enjoy the respite and happy memories that visiting the hospice gives them. As well as the care, they also enjoy visiting the local ice-cream parlour and staff are always on-hand to recommend suitable places to visit nearby.