Our Story (by Erika Petrie)

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My youngest daughter Micaela has Down Syndrome and global developmental delay and for the past four years, has been in specialist education. Just under three years ago, she developed sepsis following a biting incident (on her index finger, resulting in complete loss of her nail) at school and nearly died!

Our GP put us in an ambulance and we spent the longest four days of my life in Salisbury Hospital, where she had everything from drips to vaccines to blood tests, to an operation under general. During this difficult time, in which I ended up being mentally ill myself, I wrote the song ‘Different’. I started writing it as a ‘cry for help’ for all children who are ‘different’, and it developed into what I thought Micaela (Miki) might say if she had a voice (given she is still non-verbal), and which I think all families of children with learning difficulties or other ‘differences’ can relate to.

 

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My youngest daughter Micaela has Down Syndrome and global developmental delay and, has been in specialist education since 2015. At the end of 2016, she developed sepsis following a biting incident (on her index finger, resulting in complete loss of her nail) at school and nearly died! Our GP put us in an ambulance and we spent the longest four days of my life in Salisbury Hospital, where she had everything from drips to vaccines to blood tests, to an operation under general. During this difficult time, in which I ended up being mentally ill myself, I wrote the song ‘Different’. I started writing it as a ‘cry for help’ for all children who are ‘different’, and it developed into what I thought Micaela (Miki) might say if she had a voice (given she is still non-verbal), and which I think all families of children with learning difficulties or other ‘differences’ can relate to.

When I wrote the song, I never dreamt that it would one day become reality, but I poured all my emotion into it. I wrote the words with a very specific idea in mind, as to what it would sound like, but I didn’t really know how to put it to music. Then with the help of my inspirational guitar and music teacher, Kay Jones, we slowly started to put it to a few basic chords last year, enough for me to be able to play it to a few friends, so they could hear what it sounded like on the guitar. Then thanks to social media, I reconnected with a British (half Czech) very talented musician friend of mine, Julian Saxl, who I knew from my ‘modern jive dancing’ days, and who now lives abroad. I told him how I wanted to turn this song into something really ‘special’ musically, to raise money for charity and to give all people who are ‘different’ a voice, and he told me he wanted to get involved in the project as he believed he could help me. He is multi-talented when it comes to playing instruments, but his particular specialism is his ability to play the violin in a truly ‘heartfelt’ way.

In 2018, I sent him my lyrics and a very basic version of me playing the song on the guitar, and he transformed the track into the musical masterpiece it has now become – he managed to preserve the sentiment I intended when I wrote it and this is why, this has now become even more meaningful to me. Shortly after sending him this basic version, I met (thanks to Diverse Abilities and Dorset Children’s Foundation), the fabulous Jamie King (project developer) at Absolute Music. These fantastic charities started to organise free music sessions for SEN children and their siblings at AM in Bournemouth, on a regular basis during all school holidays, as a unique opportunity for these children to have some ‘hands on’ experience of different musical instruments and the power of expression through music. On meeting Jamie and realising this was his charity remit, I asked him if he would be happy to be involved with the song if we reached recording stage, and the answer was a resounding ‘yes’. Last year, just after Easter I received the completed track from Julian and saw Jamie at another of the children’s music sessions, when he gave me his business card and suggested I get in touch, once I was ready to proceed.

We subsequently met up on 1st May to discuss the song, and we put a recording date in the diary. On 14th May 2019, we recorded the song (at my house, with Jamie’s state of the art recording equipment), with my vocal on it and Kay joined us to sing the harmonies, which boost the chorus so beautifully. Jamie thought it would be a good idea to have an alternative version of ‘Different’ to appeal to a wider audience, so he remixed a more ‘pop/disco’ version of the track, which in its original version is more folk (with the violin playing a key part!). On the day we recorded, we were blessed to have Sam Harvell, the son of a friend of mine and a film studies university student, join us to take some valuable video footage and so become part of our team, for the production of our video. He subsequently came back to the house to take footage with my girls – Julia and Micaela, and he also took some footage at a recent Absolute Music session held during May half term and subsequently at Micaela’s school, (Beaucroft) in June. He also took some further footage in our garden in July with some other DS children from Downright Perfect.

Since the start of the process, we have also been fortunate in securing the services of a brilliant and very talented professional photographer, who has taken a lot of the professional pictures for our website. My music teacher Kay and close friend Michelle, who are both South African were at a party recently when they happened to meet this fellow South African, a photographer by the name of Greg Lumley who has recently moved here and volunteered to get involved in the project. I have been extremely blessed throughout this process to encounter a number of selfless individuals, all with the same heart for charity as myself and all willing to be part of this ‘bigger picture’ project, which can speak to so many people who are ‘different’ in today’s society. I am proud of every single member of my team without which this complete project in its entirety, would not have been possible. This includes Ben Rugman, who prior to last Summer become involved in further developing our website and its photo gallery.

My primary intention with this song, is to give a voice to children with Down Syndrome like my Miki, who are very much overlooked and under-represented in today’s society, and who have every right to have the same rights we do! They are even discriminated against at birth in that parents are given the option to abort, when this is not the case with any other disability and I find this horrendous! I also appreciate however, that the wording of the song could be an anthem for all children who are ‘different’ generally, and for a variety of reasons, whether non-verbal like Miki or not, do not have a voice. My main aim with this song is to raise awareness and valuable funds for Micaela’s school (Beaucroft Foundation School) where, as is the case with most special schools today as well as across the whole of children’s services, there is a severe lack of funding. This is essentially to fund vital therapies (such as occupational and speech therapy), but also more significantly music therapy which helps all children, whatever their age or ability.

In addition to this, I would also like to give back to some charities that have supported us over the years, some of them smaller and who still struggle for their ‘voice’ to be heard – these charities are as follows: 21&Co (run by a lovely lady named Tatty Bowman), which is a local down syndrome charity located in the Surrey area where we used to live; Downright Perfect which is a local DS charity where we currently live in East Dorset; Dorset Children’s Foundation (run by the legendary Patsy Hallmey), a local small charity which organises activities across the whole of Dorset for ‘differently able children’; Diverse Abilities, a larger charity in our area, a lot of people will know, but which supports smaller projects within it, such as ‘Project My Time’ and ‘Coping with Chaos’, which have been invaluable to us.

It is wonderful the way this has all fallen into place over time! I hope you enjoy the song, the video, the story behind it and most importantly being part of this ‘Different’ journey.

Different

Note word script: Music by Julian Saxl Lyrics by Erika Petrie

Different Music Sheet
Different Music Sheet

Donate Now!

As of 31st March 2022, Shades of Different is now officially registered as a charity incorporated organisation (charity no: 1198481). We aim to raise funds to provide vital therapies and promote better inclusion for differently able children, initially in Dorset and hopefully spreading to other parts of the UK in the future. Please donate as little or as much as you can, knowing that this will really make a difference to these children who really deserve it and can help to make our world a better place.

Thank you