Lily-Mae, from Witney, has been coming to Helen & Douglas 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 the support she needs.
Lily-Mae’s Mum, Leanne, heard about Helen & Douglas House when her friend, who sadly passed away in 2000, came here for end-of-life care. Leanne first learnt about Lily-Mae’s diagnosis in 2015 and was referred to the hospice for respite. It took her some time for her to come around to the idea, but she eventually came to look around Helen & Douglas House in 2016. At that time she was not ready for Lily-Mae to stay at the hospice, but a year later they finally ‘bit the bullet’ and came for a respite stay. Since then, as a family, they have not looked back and both now regularly enjoy their respite visits.
Visiting Helen & Douglas House and having support whilst staying now means so much to Leanne. ‘Lily-Mae’s condition means that she could have a seizure at any moment. She has epilepsy and therefore always needs a set of eyes on her in case of a seizure, which for her can be very unpredictable. It is worrying as it may only take one serious seizure to do the worse. When I come to Helen & Douglas House I know that they are there for us and they can give me advice on where to go or who to speak to for more advice when we go home. It’s not just you come here and that’s it, they are there for you all the time.’
Another reason they both love coming to Helen & Douglas House is that it is like a ‘second home’ for them. Lily-Mae’s condition means she is unable to walk and talk and needs help with everything from feeding to medication, as well as moving. They have limited help at home, but when they come to the hospice they can both enjoy spending time sitting with other children and families, interacting and seeing what life is like for them.
Helen & Douglas House also gives Lily-Mae the chance to enjoy activities than she can’t do at home with the help of our specialist facilities, such as the therapy pool and sensory room. As well as this, during a stay, she also loves interacting with other children, as well as people-watching and even sleeping. These may seem like ‘normal’ activities for some of us, but just having the support of the hospice nurses and doctors gives both Mum, and Lily-Mae, the opportunity to relax a bit more and really enjoy their time together. Mum also told us that Lily-Mae can only have a shower at home, so during her visit she loves the opportunity to have a soak and splash about in our therapy pool.
Despite Lily-Mae’s condition, Mum Leanne says ‘Lily-Mae gives me beautiful smiles and beautiful cuddles and despite not being able to talk, her eyes tell me a million things. That is why coming to Helen & Douglas House is great for us, for creating memories and the little things. One day memories are all we are going to have left, so it is all about treasuring everything and every experience, as well as taking plenty of photos together.’
Lily-Mae stays at Helen & Douglas House on several occasions throughout the year. To make the most of their time at the hospice, Mum Leanne spreads out their annual allocation evenly so that they can regularly attend and both enjoy the respite care throughout the year. When they visit they love creating happy memories together, such as visiting the local ice-cream parlour, which is a short walk from the hospice, and knowing that staff are always on-hand to recommend other suitable places for them to visit nearby.
Leanne also told us ‘When we are here I know that Lily-Mae is safe and I know she will see familiar friends and makes new ones. I know that the staff do everything they can to put smiles on the children’s faces and those are the times that you have to cherish. The staff are more than just the staff at Helen & Douglas House. They are gifts to our families that we couldn’t live without.’