I do photography for charity events (if you are holding a charity event, please contact me to see what I can do for you) as for me they are a bit more closer to my heart than some other photographers as (many of you may not know) one of my daughters is disabled with Cerebral Palsy and we have fundraised in the past for her to get things she needed, so when I do events like this, I'm wearing my Dad hat as well as my Photographer hat...
To best explain the fundraising efforts and the reason for this event I will let Katie tell you more about her amazing little girl Molly:
Molly is an eleven year old girl who has lived all her life in Offord. Molly has a rare condition called PHACE syndrome. To date approximately 400 children have been diagnosed with this condition across the globe. The cause is thought to be genetic, but is not hereditary. Molly lived a normal life up to the age of six, when in August 2009 she suffered a major brain haemorrhage and subsequent stroke. This was caused by abnormal blood vessels in her brain, which is common in children with PHACE.
Mollys stroke affected a small but key area of her brain, the basal ganglia. This is the part of the brain that houses the control centre for all movement. In an instant Molly lost her ability to move, speak and swallow. In January 2010, Molly started a 6-month rehabilitation programme at The Children’s Trust in Surrey. At the end of six months, Molly had just started to talk again, she was eating solid food and was able to stand for a short while in a standing frame, and take one or two steps with help. BBC Look East visited Molly at The Children’s trust and a short film about her was shown on the local news. A transcript of the video is below.
Last summer six year old Molly Moore went on her first ever pony camp.
Family video shows her and little sister Daisy racing each other, giggling and laughing, as they bounce around in their saddles.
Twelve days later Molly had a massive brain haemorrhage.
The prognosis was not good. Her motor skills were severely affected by her stroke, leaving her unable swallow, speak or walk.
But this wide-eyed joyful child is strong and determined.
At Christmas back home in Cambridgeshire Molly smiled. And then she laughed. It was all her family needed to know.
"At one point we had a priest come in. We really thought we were losing her "
Molly's mother Katie
Her mother Katie is resolutely positive. "We originally said as long as we can do things with Molly that make her happy and she can tell us that she's enjoying life, then life is still worth living.
"But if she's lying in a bed and not being able to communicate and we don't know if she's trying to communicate of not … well, that's tough."
So what happened to Molly? As a toddler she suffered a small stroke.
Soon after she was diagnosed with an extremely rare condition called Phace syndrome. It is the uncommon association between large infantile birthmarks and defects of the brain, heart, eyes, skin and arteries.
Molly's birthmark had been removed long before her diagnosis - the link not made with Phace syndrome. She lived normally for the next five years.
Her parents were away for the weekend when Molly's grandparents phoned to say she had collapsed.
"Your world stops and you're driving to the hospital thinking please let her be alive when I get there," Katie remembers.
"At one point we had a priest come in. We really thought we were losing her."
In January Molly was moved to The Children's Trust, a rehabilitation centre in Surrey for brain injured children.
Every day is a working day. And every day Molly's condition improves. She can talk. It's not always clear, but her voice is now heard. She can sort shapes and eat toast. Last month she walked for the first time.
Physiotherapist Rachel Hinchliffee says it isn't easy for her.
"To begin with she was tolerating quite a long session but she wasn't actually managing to do much movement.
"The more movement that's coming back she's getting tired very quickly now, so we're trying to do lots of short sessions with her throughout the day."
Molly is not out of danger yet. There is a very real chance she may have another brain haemorrhage. But all being well, Molly is coming home in July.
Katie said: "We want to look back in however many years and say we gave Molly the best chance.
"If she can get back to 50% of how she was before, fantastic, but we're not going to settle for 40. We want 50. And if we can get 55 we'll do whatever it takes."
And Molly's plans for the summer? To get back in the saddle.
Molly returned to her old primary school in Offord in September 2010, with one-to-one teaching support. She completed her schooling there, and in September 2014 she moved to secondary school – Samuel Pepys in St Neots.
Molly is still dependent on a wheelchair and adult support for all her daily tasks – washing, dressing, eating, getting around, holding a pencil etc. Over the last 3 years we have been funding specialist physiotherapy for Molly at the Footsteps Centre in Oxford. (www.footstepscentre.com). This is a centre which focuses specifically on helping children like Molly to learn to walk again. Each session takes place over 3 weeks, and Molly has 3 hours physio each day, five days a week, for the three weeks. A total of 45 hours of physiotherapy in a concentrated block. (Molly currently receives 26 hours of physio each YEAR from the NHS). The therapists work on her core strength and balance, leg strength and correct positioning when walking, and also on her left hand and fingers as these have no voluntary movement at present. After each session we see small improvements in Molly, but we know that it will take many sessions to achieve her ultimate goal of independent walking. In 2015 Molly will spend a total of 12 weeks at Footsteps, and we have just booked a further 12 weeks for 2016. Each three week block costs £2250, so we are constantly fundraising to pay for this vital therapy.
Last year Molly’s dad and a friend cycled from John O’Groats to Lands End, and raised enough money to cover the 2015 sessions. This year, I am arranging a Black Tie Ball in November and hope to raise enough money to cover the first two sessions in 2016.
All the money we raise is sent to the children’s charity the Tree of Hope, (www.treeofhope.org.uk) who have a separate fund which is ringfenced for Molly. In this way, we are able to have a Justgiving page and also benefit from giftaid on any donations. All invoices from Footsteps are sent direct to the Tree of Hope, and they manage Mollys account and make the payments. If for any reason we are unable to use funds raised for Molly for her benefit, they will go into the general Tree of Hope charity account and be used to benefit other children.
The ball that is planned for November is going to be a really special evening. There will be a champagne reception, four course dinner, photographer with a mini studio (Gaskin Photography) entertainment and disco. There will also be a raffle and silent auction on the night, and I am hoping to make this an annual event.
We will continue to fund raise for Molly until she achieves her goal of being able to “run around with my sister again” however long it may take.
If you would like to find out more about Mollys progress to date, below are the links to some of the news coverage about her.
Katie Moore (Mollys mum).