With the *sterling* help of PR consultant Kate Butler, we're now organising a 'Rock and Respite' benefit gig for Francis House Children's Hospice in Manchester, who provide respite care the families of terminally-ill children. This will will take place on 19th September 2010 at Sound Control.
Links:
Posterous Site: rockandrespite.posterous.com/
Website: rockandrespite.com/
Ticketline: tinyurl.com/37n2vow
Press: www.music-dash.co.uk/news/news.asp?item=2721


This is Elizabeth, our seven-year-old daughter, listening to her favourite music (The Travelling Band from Manchester). She was born with Down's Syndrome, and had to undergo major heart surgery at 3-months-old after becoming seriously unwell, and after spending a number of months on life-support in intensive care. She came through the surgery, and has since been diagnosed with cerebral palsy, West syndrome (in remission), CVS and is also registered blind. She's also had fundoplication operations for reflux, and has various other conditions which have to be managed on a constant basis with various drugs, physiotherapy and lots of love. She'll never be able to walk, or talk, but she sure does smile an awful lot...


This is a scan of a Polaroid taken when Elizabeth was two months old, at Pendlebury Hospital in Salford. During this time she was suffering from chronic heart-failure, and needed life-support after being recuscitated twice at St Mary's Hospital. Elizabeth remained this way for a number of weeks, in a vain attempt to get her fit enough to undergo heart surgery at Alder Hey in Liverpool. Ultimately, and after many heart-rending conversations, the decision was taken to transfer her and go ahead with it, as she was slowly becoming worse and *needed* the heart operation. It was the longest day of our lives thus far, and following a few complications, she pulled through.


Elizabeth playing with the rope lights at Francis House Children's Hospice, where we attend a few times a year for respite care. They've asked if they can use this image on their Christmas cards for this year.


A recent, hackneyed image, based on her ability to attract 'Little Fighter' comments! This photo, I've just been informed (August 2010), has won an 'Outstanding Achievement' type-award with Mencap's photography submission for an advertisement campaign (along with two others in mainstream categories). We're off to London in September for the champagne-soaked awards ceremony in Soho, and it's going on a UK touring exhibition in October/November. Whoop!


Elizabeth at 4-years-old. This photo won the national MENCAP 'Snap' photography competition, and went on a touring exhibition of the UK. It was titled 'Tickle', and I pulled the judges' heartstrings with a slushy caption!



One of Elizabeth's school friends, welcoming her back to school after another operation.



Laughing...as usual. An iPhone app photo, added here simply because I love this pic. An artist friend (Maz Seaman) has kindly offered to paint a portrait of Elizabeth from one of my photos, and this is the one I think I'll choose. Hmmm..?



Eliz lost her 'feeding response' straight after recovering from the heart surgery, and is now exclusively fed through gastrostomy (a button on her stomach, through which high-energy milk is fed.)



Seven years ago, we'd never have though we could have managed with a severely disabled child. Now...here's Mum, multi-tasking, feeding (and holding) Elizabeth whilst sending a text message. I remember the early days when we were being trained in changing gastostomy tubes and feeding techniques, and we both didn't think we could cope, but it's become almost second-nature now.



Elizabeth's ear. The top of her ears are slightly folded over, which we were told is indicative of Down's syndrome by a geneticist at St Mary's Hospital when she was few days old (and before any blood tests had been carried out.) The plaster you see is an anti-travel sickness aid, which also stops her from drooling.



Her eyes have noticable white flecks around the iris, which can be seen here, and which we were told is fairly common with children born with Down's, and is one of the first things doctors look for when suspecting it with a new-born child.



Having her teeth brushed in the bath, which she hates.



One of her favourite 'toys', a shower head. She laughs like crazy when it bumps into her seating aid.



Family day out at a farm on Anglesey, during one of her longest periods of good health.



Foal Farm, Anglesey.



With her cousin Laura, on a bouncy-castle in Wales.



With her Nana, on a family holiday to Wales. She's never been well enough to travel abroad, but we're planning a 10-day trip to Disneyland Florida this year, with medical support supplied by a charity. She was poorly here with CVS, hence the kitchen roll!



In her surgical gown at Alder Hey Children's Hospital in Liverpool, minutes before going for a stomach operation (her first one). This always upsets me the most, as you can see she has no idea what's about to happen.



A few hours after surgery...and smiling again.


Same viewpoint, and within seconds of the last one. This is Elizabeth somewhat distressed. For around a day or so following any operation, she seems to think that anyone handling her in any way inevatibly means they're going to stick a needle in her. She soon recovers from this though.



Mum by Elizabeth's hospital bed, wondering when we'll get out of here.



In the bath, back at home, and showing her battle scars from the heart and stomach operations.



Watching CBEEBIES at Wythenshawe Hospital, Manchester, a few years ago. She's registered blind and can't see further than a metre or so, but the theme tunes to shows on this channel make her laugh.



Something else she hates, along with having her teeth brushed, is having her hair brushed. That makes two dislikes, not bad for a seven-year-old. It's quite an awkward procedure, as she has to be lay over Mum's knees to do it, and I think it's a comfort thing more than anything else. Having said that, just lately she's even been finding this funny.



Elizabeth was diagnosed with Cyclical Vomiting Syndrome last year, which is a particularly nasty form of migraine. This image shows her in bed during an attack, and STILL managing a smile. We're now at the stage where the camera shutter noise makes her laugh!



As she doesn't use her legs to walk, her cerebral palsy is causing deformities in her ankles. This will require further surgery to correct, and the first one is due mid-February 2010.



Her bed and toys, while she was away in hospital again.



Following (unsuccessful!) Fundoplication stomach surgery, 2008.



Appearing in an advert I shot, with her Mum for Francis House Children's Hospice, which provides respite care for the families of severely disabled chilren here in Manchester. The hospice only receives 5% of their required funds from the government, and rely heavily on the generosity of charity donations from the public.



A bedroom door sign her older brother James made at school.




Another one of Elizabeth's friends, Lillie. These photos were taken during one of Lillie's visits to the house, and she appears well and happy. Lillie has a rare lung disease, incurable and requiring 24-hour oxygen support. She also has Down's syndrome.



This is Lillie just over a year later. She's slowly losing her hair due to ill-health and poor immune system. She's one child who seems to spend as much time in hospital as Elizabeth.



Enjoying a music therapy session at Francis House with Brigitte. The music therapy sessions really opened my eyes to how previously uncommunicative children responded positively to music. These photos were taken at a one-on-one session, but they usually include all the children staying at Francis House on that day. They've inspired an idea for a benefit gig to raise funds for Francis House on 19th September 2010, plans for which are now well underway.
rockandrespite.com/
rockandrespite.posterous.com/



Brigitte, tinkling the ivories at Francis House.



Elizabeth and Brigitte.