Sharing music for Piper
In this job there are often moments from interviews that stick with you, I had one of those moments last week when interviewing the Barnes family in relation to their daughter Piper. Three-year-old, Piper Barnes has infantile spasms, a severe form of epilepsy, global development delays, cortical vision impairment, risk of aspiration (tube fed) and microcephaly.
Mid interview a gorgeous little giggle filled the room, it was Piper’s. She was hysterically laughing at herself, she was truly happy and it made me think, if this gorgeous little three-year-old girl can find happiness and laughter in her life after everything she has been through and continues to endure, then she is a complete inspiration to me.
As you could imagine, with Piper’s conditions comes many ongoing costs. To alleviate the financial burden to the family they have decided to host a special concert fundraiser on March 3, at 2pm, held inside the OPS School Hall (on Kite Street).
Grandfather and Bathurst local, Roger Jones and his daughter (Piper’s Mum), Ashley Barnes, will be hosting the fundraiser. Mr Jones said, “We really just wanted to get together and have a sing, though I think now it has a great cause behind it. OPS were more than happy to let us use their hall which is fantastic. We have all of the facilities we need, for our two-hour concert.”
“I am in the Macquarie Male Singers and Ashley is in the Cantar Ladies Choir, funnily enough I have never sung with my daughter before. We are the two groups who will be performing on the day and we are going to have some raffles amongst the performances as well. It’s going to be a fun afternoon.”
Why music? Apart from Piper’s family being very musically inclined it has also helped her on her journey so far. Ashley said, “It started when we began taking her to Early Years Music School with Ruth Thompson. It helps with development and it’s great for the soul, if I have her sitting on my lap and just hum you can notice she really responds.”
“Piper had a great 2018 and hopes to continue that this year. She is standing with assistance and using her stander and working on strengthening her arms for a four-point crawl position. She is still sitting beautifully and with great posture. This will be continued this year as well as some feeding therapy to help with her food aversion and swallow technique.”
Ashley added, “Life has been difficult for Piper, but she doesn’t know any different. She’s a happy little being, showing so much enthusiasm and love for music, which I think she gets through me.”
A gold coin donation is appreciated for those who attend the concert. Piper will be there front and centre, we hope to see you all there too!
If you would like to keep up with Piper and her progress, simply follow ‘Piper’s Progress’ on Facebook.