Madelyn's story (in loving memory)
Madelyn was a cheeky 8-year-old with the best personality who brought immense joy to her mum Melissa, dad Marcus, and 8 siblings. “She did, and always will, dance to the beat of her own drum”, says Melissa.
Madelyn had numerous diagnoses and very complex care needs. Although she was not born with them, her main conditions were spastic quadriplegia cerebral palsy and epilepsy with suspected autoimmune encephalitis. Spastic quadriplegia cerebral palsy meant that she had limited use of her limbs and trunk. “Although her left arm was a weapon!” laughs Melissa.
For Melissa, coming to Hummingbird House meant an opportunity to disconnect from being a carer, and just be mum. “Coming to Hummingbird House was like a home away from home, where we were able to reconnect as a family without Madelyn’s conditions being the main focus. We could be a family without feeling like we were constantly in a hospital setting.”
“Hummingbird House gave us the opportunity to interact with her as her mummy and daddy which we didn’t get in any other environment, because we were carers 24/7 and that was so time consuming that we often missed out on the fun stuff that parents of ‘typical’ children could do on a regular basis.”
“We have learnt that Hospice doesn’t just mean end of life care; it’s about supporting families and quality of life. During our first tour on an open day, we immediately fell in love with the warm, happy, bright place, where everything has been done to maximise the sense of enjoying and celebrating life. For our first stay, we were welcomed like old friends and cared for as a whole family like we were their family. If you want your faith in humanity restored, and if you want to see how families who often carry an unbearable load of responsibility are supported, then go to Hummingbird House. ”
“Even before we had our first stay there, we regularly had the staff ring us to check in and see how Maddy was doing and how the family was. There was never any pressure from them, and they let us guide the way. These beautiful souls on the other end of the phone would often become our shoulder to lean on and vent to because some days were really hard, and they just “got it”. They are an extra layer of support and will become an invaluable asset to your family. Hummingbird House will forever be a part of our family and hold a place close to our hearts.”