Hannah’s Billie Eilish experience

Hannah from Barnet is 25 and has a diagnosis of facioscapulohumeral muscular dystrophy (FSHD). After being referred to Willow by Maria, a clinical nurse specialist, we arranged for Hannah and her mum to see Billie Eilish live at The O2 arena which made her biggest dream come true and gave them memories that will stay in their hearts forever.

“Thank you, Willow, for giving us a memory that will stay in our hearts forever.”

Hannah’s story 

“I have breathing difficulties which can restrict activity levels and require non-invasive ventilation 19 hours a day due to my type two respiratory failure. Fatigue is a constant challenge, made worse by the respiratory complications.

“I deal with a lot of anxiety about my breathing or how my body may change further in the future as my condition is progressive. My life becomes more structured around care routines, medical equipment and appointments.

“Living with FSHD and type two respiratory failure means facing constant battles from a compromised immune system and hospital stays since 2022, to coping with depression, anxiety and the weight of uncertainty. Music has always been my escape, my therapy and my joy.”

Attending the Billie Eilish concert

“Thanks to Willow, one of my biggest dreams came true – I went to see Billie Eilish live at The O2 arena in London with my amazing mum by my side.

“We sang, we danced and for the first time in a long time, we truly felt alive. That day reminded us that even in the darkest moments, joy is still possible. Thank you, Willow, for giving us a memory that will stay in our hearts forever.”

“Thanks to Willow, one of my biggest dreams came true on my Special Day.”

Willow provides special experiences for seriously ill young adults, like Hannah. Donate today to help more families create lasting memories.