Benedikt’s Story – Music and Children’s Palliative Care
Please consider supporting the important work of Bundesverband Kinderhospiz E.V www.bundesverband-kinderhospiz.de
Benedikt lives in Speyer, Germany with his parents. He has a great passion for music and loves playing drums. Through his involvement with Kinderhospiz-Sterntaler he’s had opportunity to pursue his passion as the hospice provide space for him to play and have even arranged for his idol, pop star Daniele Negorni to jam with him. This wish fulfillment has been a dream come true for Benedikt and inspires him to go on playing despite his debilitating and complex heath issues. The connection as also inspired Daniele and he has now become an ambassador for Children’s Hospice.
“Benedikt is more than inspiring. I was very amazed by him” Daniele Negroni, Musician. “In addition to what his mother had told me about him playing music and playing the drums so, I was prepared to hear him play but that he could hit the drums they way he does! He can play my songs and he is fantastic on the piano, too. Not just with two fingers but he masters the piano with both hands. He has a true talent.”
‘Benedikt is an amazing boy. He can’t walk, he relies on a wheelchair. He had a tracheotomy and suffers from many different health problems.’ Sabine Kraft, Bundesverband Kinderhospiz E.V. CEO
Anne Reinacher, Benedikt’s Mother tells us ‘Benedikt has a bone disease and had to have a tracheotomy when he was 6 weeks old.’ ‘He has no calf bone and a malposition of both feet; he has bladder and bowel problems and is incontinent. He suffers from a strong scoliosis, which is getting worse and he has epilepsy. He is blind in his right eye. He has a syndactyly on both hands which was, however, improved by an operation. He also had a cleft jaw and macrocephaly. These are the basic issues.’
Benedikt tells us that sometimes the scoliosis causes’ him pain.
Anne continues ‘He dislikes having to wear the brace. He is supposed to wear the brace 15 hours per day to stop the scoliosis from getting worse. According to the doctor, if it is worn 15 hours per day, an operation might be avoided. Benedikt wants to avoid the operation at all cost.
‘Seeing him meet Daniele the popstar was simply adorable. One got absorbed by the whole atmosphere. The strong energy between the two, incredible! A truly happy thing for Benedikt, I think, to play music together with Daniele, his popstar idol.’ Sabine Kraft.
‘Today was a very special day.’ Linnford Nnoli, Kinderhospiz-Sterntaler Manager ‘Bene was here, one of the Sterntaler children who has bee on a long journey with us and who we know very well. Someone who we are very fond of because he is a great musician. Today was special because Daniele Negroni was here. He held a jam session with Benedikt as a special treat just for and with Benedikt. It was obvious form the footage and live action here on site how much it meant to Bene. Similar to other kids who the ambassadors of the Bundesverband Kinderhospiz engage with.’
‘Those turning a blind eye to children’s hospices are wrong, kids living in a children’s hospice are just like us. Benedikt is a great example of this. He is a top class musician. It is difficult to explain but during my own time as a musician I had a lot of contact with kids form the children’s hospice, even before I took on the role as ambassador. I noticed how much the kids flourish when they spent time with their idols, rather than spending their days listless and alone. Instead you see the joy in their faces. That’s why we need to support children’s hospices. Everyone here is just like us, as I witnessed today.’ Daniele Nigroni
– Daniele Negroni, Musician
– Sabine Kraft, Bundesverband Kinderhospiz E.V. CEO
– Benedikt Reinacher
– Anne Reinacher, Benedikt’s Mother
– Karl-Heinz hild, Benedikt’s Stepfather
– Linnford Nnoli, Kinderhospiz-Sterntaler Manager
Care Beyond Cure – Ondine's Syndrome “One of the things I remember when we first met Matteo was the phrase ‘we are giving you a baby who is alive’ that phrase meant everything and nothing, it meant that Matteo could die at anytime. Children...
Hope and Hyperinsulinism in infants “Don’t be afraid that things like this happen, I believe that every obstacle that is given to you in life is there so you can overcome it and become stronger.” Lana Krupenrova, Anastassia’s Mother....
Thriving with Thalassemia Major "I believe it's the quality of life, it doesn't matter how long I may live, but if I live well, I would have lived well. I believe these children also think the same way and want fun, want enjoyment, want...
"Just the sheer fact that someone as high profile as HRH Raja Zarith or HRH The Duchess of Cambridge are both serious and passionate about this movement automatically makes it a subject worth discussing." Gail Featherstone, Wife of the...
“When you realize how uncertain life is , you do begin to appreciate the value or family and friendships and enjoy those moments while you have them because you don’t know what’s around the corner,” Simon Waring. Marmaduke’s Story highlights...
"The term palliative care often is perceived by some of my colleagues and some parents as giving up hope or working with the death-and-dying squad. What they may not understand is that clearly using palliative care means that kids actually...
“The death of a child is considered the worst loss you can go through and I think that’s particularly true of the families I’ve worked with ” Natasha Samy, Social Worker & Bereavement Counsellor. This short film tells the story of...
“Paediatric palliative care in its essence is a response to the suffering of a child and a family who are facing life-threatening or life-limiting conditions It’s holistic, looking at the body, mind and spirit within the social and cultural...