This is Emmy. Emmy is one of Carly + Daves beautiful daughters. Carly + Dave are a truly lovely couple who’s wedding I shot back in 2012. I have watched them get married, grow as a family, move house and most recently went through one of the hardest things I think parents could possibly experience. Emmy is a very typical 2 year old, she is cheeky, she is loud, she is smiley, she is stubborn, and she is determined but what makes her different to all the other two year olds is that Emmy cannot walk on her own. This is Emmy’s story:
Emmy was diagnosed with Cerebral Palsy Spastic Diplegia at 20 months old. She has a type of brain damage called Periventricular Leukomalacia (PVL) which was caused in the womb, which is where her story really begins. Emmy has been through such a lot in her short life already…
Emmy is an identical twin. At 23 weeks gestation her mum Carly developed acute Twin to Twin Transfusion Syndrome (TTTS) and had an emergency laser ablation surgery on her placenta. The laser surgery was the only hope that both the girls would survive. Three days after the emergency surgery, they found out that one of twins heart had stopped beating. In the doctor’s next breath, they also told Carly + Dave that this most likely meant that their surviving daughter would have some form of brain damage, due to an interruption in the blood flow to her brain when her sister died.
Emmy was born suddenly at 32 weeks gestation (8 weeks prematurely). She was immediately whisked away to the neonatal intensive care unit whilst Carly + Dave had to say goodbye to her twin sister, Ava, who was born sleeping.
Emmy’s Cerebral Palsy causes increased muscle tone in her legs and feet which makes them constantly stiff. This affects her balance and coordination, making simple things such as crawling, cruising and even sitting up harder for her. Emmy is not yet able to stand or walk independently. There isn’t a cure for Cerebral Palsy, but there is a life-changing surgery available called Selective Dorsal Rhizotomy (SDR) which is a special technique that involves cutting some of the damaged sensory nerve fibres which are causing the muscle spasticity (stiffness). SDR is the only surgical procedure that permanently reduced or eliminates the spasticity in the legs. Spasticity causes a lot of pain, and over time, shortening of muscles and tendons, joints contractures and bone deformities. Without SDR, Emmy would face multiple orthopaedic operations, Botox treatment and leg casting throughout her life and would ultimately need a wheelchair.
This is the really really crazy part, SDR is not funded by the NHS. However, in the United States, DR T.S. Park has performed over 3,000 operations and people from all over the world have travelled to St. Louis for this treatment with him. The results from SDR are simply incredible and children that were told they would never walk are not only walking, but they are also running, jumping and dancing too, just read that sentence again – KIDS THAT WERE TOLD WOULD NEVER WALK, ARE WALKING BECAUSE OF THIS OPERATION.
Now here is the BUT, the operation + aftercare costs are a whopping £85,000. No family has that kind of spare money so the King family have launched Ready Emmy Walk. This campaign along with the generosity of people like you will help to raise the funds needed and Emmy can start doing the simple things in life that are often taken for granted – she will get to walk alongside her big sister Isla, she will get to walk up the steps of the slide in the park and she will get to jump in muddy puddles like her favourite character, Peppa Pig!
Emmy is the most determined, funny, cheeky, messy and lovely two year old you could ever meet. I saw this for myself when I spent some time with her last week. When she falls over, she gets straight back up and tries again with a huge smile on her face. She does not give up and she also loved my cameras. I was so taken back by her enthusiasm and perseverance when photographing her, nothing stopped her, she just kept going no matter how many times she fell. She is so full of love and has so much spirit it was truly infectious to be around her.
So all the mega important bits about how you can help Emmys campaign reach that £85k target:
- You can donate via www.justgiving.com/readyemmywalk/*
- Text ‘EMMY81 £5’ to 70070 now to instantly donate.
- Keep up to date with events and progress reports on Emmys facebook page: www.facebook.com/readyemmywalk/
- Or if you have another fundraising idea or can help in any other way you can contact Carly and the team by dropping a line to firstname.lastname@example.org
*All the fundraising is through Just4Children (registered charity no: 11644773).
It would be awesome if you could spare a few pennies and donate. I really can’t wait to go back and photograph Emmy walking.