My daughter Katie was born in 2010 at 31 weeks so she was premature. She was in hospital for the first six months of her life. After a lot of tests, we got a diagnosis of mitochondrial disease which we had never heard about before and we were told that it was a life-limiting condition; there was no cure. A colleague of my husband’s in his work mentioned LauraLynn Hospice, Children’s Hospice, which we had heard about but my idea of a hospice would have been for the last couple of weeks or months of somebody’s life. But he said he’d contact them anyway and wanted to talk, so that was good, because I don’t think we might have made that phone call ourselves, it might have been too difficult. LauraLynn Hospice was great. They came out to the house, two of the staff members and just explained what it was, explained about respite care, which we didn’t know about, that we could go and get to know them and Katie could have short stays there.
Gradually over the months we got to know all the staff and they got to know Katie and what type of care she needed. And it was brilliant, it really gave us reassurance as well then because we knew Katie was going to die that, obviously our first preference, and everyone’s preference is different, we wanted Katie to hopefully, when she was dying, to die at home in the family home. But, if that wasn’t possible, that our next choice would have been the hospice and then third choice the hospital. Even just for caring for Katie every day, just in the back of your mind, you had that comfort that ok if home isn’t an option then we have this other in between option. There is only a limited number of children that can be cared for at one hospice, one children’s hospice and the demand is bigger than the supply at the moment, so there needs to be like with the adult’s hospices all around the country. People often don’t think that there’s that many children who need it but it’s only when you are in the service that you realise how many families need it and maybe they don’t even know about it. And it would just really help their family and their own child’s life to make as many nice, happy, special memories that can be made and make the most of the time that they have with their child.
Katie has passed away now a few years and it’s still very hard but it just changes you know, it’s a difference type of hard every day you know but just to be still linked in with the services helps us carry on and get through the days and kind of keep normal life going, even though it can be quite hard at times because we miss Katie every day and wish she was still here with us.