Lucy’s story – art and children’s palliative care

Categories: In The Media.

Lucy is a 16 year old, teenage girl who lives with her parents in Munich, Germany. She is an avid artist who has big dreams for her paintings, “I hope to become famous one day that all the people in the street know who I am. I hope to make money with my paintings and that a shop will be opened where my paintings are sold, that would be cool!” said Lucy, in the opening scene of the film. Despite having an unusual painting technique and having the challenge of holding the brush in her mouth, people find Lucy’s art exceptionally beautiful and unique. Lucy has Spinal Muscular Astrophy (SMA) that has drastically limited her mobility.

Anika, Lucy’s mother, explains her excitement when she found out she was pregnant, especially with a little girl. “At first everything developed quite normally. When Lucy was one years old other children started to walk, this was not the case with Lucy. She was about two years of age when we found out that Lucy would never walk.” Anika explains that at the time, she had no idea of the extent of the condition. She explains that initially Lucy could do all the things that other children could do but the condition developed further and she became more immobile. “Lucy has been in a wheelchair since the age of six and has been using a respirator since the age of twelve”, explains Anika.

Lucy and her family were introduced to children’s palliative care five years ago and are currently receiving support from Kinderhospiz. “When you see Lucy and her family it becomes quite obvious how much the illness impacts their life. Their entire life is dedicated to caring for their child, everything is quite elaborate, and the little sister comes last. It is astonishing how such families manage, they rely on the out-patient services at hospice to support them at home,” said Sabine Kraft, Bundesverband Kinderhospiz CEO. Lucy explains that “sometimes it’s hard and tiring for my mom, but my mom loves me. I know I can be tiring for her, sometimes we snap at each other, but a minute later we’re in love again.”

Lucy has the same needs and dreams as other children her age. Lucy dreams of one day getting married in a lilac wedding dress, with a big bouquet of white and purple lilacs. To learn more about Little Stars, visit www.littlestars.tv

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