Smiley and mischievous Hannah was just 6 months old when her mum, Claire, first walked through the doors of The Donna Louise. And since then, coming to the hospice has been a constant source of fun, familiarity and comfort for Hannah, as well as vital lifeline for Claire. Now, almost 15 years on, Claire looks back on what The Donna Louise has meant to her and Hannah.
Born with the incredibly rare condition, Partial Deletion of Chromosome 1, Hannah’s short life has already been a constant pattern of hospital appointments and scary ambulance journeys. Her condition means that she suffers unusual but very traumatic and potentially life-threatening seizures where she stops breathing, turns blue and becomes very still; a truly terrifying ordeal for Claire...
“Hannah had her first seizure at 4 weeks old – she went really blue and I had to give her mouth to mouth. She could have up to 40 seizures a day, and the longer they went on, the more I thought she wouldn’t come out of it. We’ve had some really dark moments with Hannah’s seizures – they can be life-threatening, which is incredibly frightening.”
The days and weeks following Hannah’s diagnosis were extremely raw for Claire; she wondered... “How on earth do we live, how do we sleep, how do we care for her? I felt like I lived on adrenalin when she was younger as we were constantly in and out of hospital.”
At 6 months old, Hannah was referred to The Donna Louise and although still in its relative infancy having only opened 2 years earlier, the hospice instantly proved an essential resource for both Hannah and Claire. Claire explains: “When Hannah was diagnosed, everything was so new – having never come across children with disabilities before, it’s like stepping into a whole new world with lots to learn very quickly, and I really needed some help to guide me through. The Donna Louise has been that help from the very beginning.”
“Having a child with such complex needs can be really isolating; it means that we can’t have a regular babysitter if I need or want to go out. Leaving Hannah at The Donna Louise with other people was so scary at first, but now I know how much she loves going it’s so much easier. As soon as we walk through the doors, we feel cared for – nothing’s ever too much trouble. Hannah is straight out of her chair and having a great time getting up to all sorts of fun and mischief! It gives me a chance to do ‘normal’ activities like seeing a friend or going to the gym which keep me sane! Most of Hannah’s seizures happen between midnight and 6am, so sleeping can be very difficult. There’s always a chance that a seizure could mean end of life for Hannah and she needs the correct support, so I spend most nights with her which can be exhausting. When she’s at the hospice, it’s a chance for me to catch up on sleep, safe in the knowledge that she’s getting the care she needs.”
Coming to The Donna Louise has also been a chance for Claire and Hannah to enjoy some precious mother-daughter time, away from the stresses of their everyday life. For Claire, it means that she can spend time with Hannah as her mum, rather than carer: “The team at the hospice take over the caring role, so we can just enjoy having a nice time together. Hannah absolutely loves it – she can’t have a bath at home, so bath time at the hospice is always loads of fun splashing in the water with all of the music and different coloured lights! We love coming to the family fun days in the summer as well – clapping along to the songs on music day is always one our favourites!”
As Hannah has grown older, her seizures have become less frequent but much more severe; after going into respiratory arrest at home, she was recently put in an induced coma and spent a period of time in hospital. The Donna Louise care team have continued to be there...
“Hannah’s more recent seizures have been especially stressful and traumatic. Having the support of the care team from The Donna Louise while Hannah has been in hospital has been so important to us as a family – it would’ve been really difficult without them. They enabled me to have short breaks to rest, knowing that Hannah would still have familiar people around her.”
And with adulthood now on the horizon, Claire explains how Hannah’s needs are changing, and how coming to the hospice is helping with that: “When Hannah was younger, we’d come to The Donna Louise as a family for respite stays. But now that she’s getting older, she needs to learn some independence without me being there. When Hannah’s at the hospice – she dictates what she wants to do and the staff always helps her achieve whatever that may be.”
Looking back on the last 15 years, Claire reflects on what life would have been like without The Donna Louise. She explains: “It’s been a complete lifeline. At certain points, it’s like we’ve been on a long downward spiral, but knowing The Donna Louise is there, that we can depend on them when we need them more than ever, has made the biggest difference. If the hospice hadn’t been there, it would’ve been a very different story.”
“All of the staff at the hospice know Hannah and her needs so well and have been a big part of helping her develop as she’s gotten older. It’s a place where she can go and feel completely content, safe and have loads of fun, and I feel so happy knowing this. It’s like having another family. Life would’ve been very different without the support of the hospice, and I really hope it will continue to be.”
“To everyone who has ever supported The Donna Louise, the biggest thank you. The difference you’re making is huge; it’s much deeper than just supporting a charity – you’re enabling Hannah to do so many things that she otherwise couldn’t. The love, care and happiness we feel at the hospice means we always come away feeling so much better, and Hannah always comes back feeling tired, because she’s been having the best time!”