Ready Emmy Walk!
We are a family of four from Basingstoke in Hampshire. We have a five year old daughter called Isla and a two year daughter called Emmy.
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, I developed acute Twin to Twin Transfusion Syndrome (TTTS) and had emergency laser ablation surgery on my placenta. The laser surgery was the only hope that both our daughters would survive. Three days after the emergency surgery, we found out that one of our daughter’s hearts had stopped beating. In the doctor’s next breath, they also told us that this most likely meant that our surviving daughter would have some form of brain damage, due to an interruption in 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 from us to the neonatal intensive care unit and we said 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 reduces or eliminates 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 orthopedic operations, Botox treatment and leg casting throughout her life and would ultimately need a wheelchair.
Emmy currently has physiotherapy and hydrotherapy once a week to help with her condition. She wears special orthotic boots to help keep her feet flat to the floor and uses a ‘Kaye Walker’ frame to move around.
The results from SDR are simply incredible and children that were told they would never walk are not only walking, they are running, jumping and dancing too.
Emmy is the most determined, funny, cheeky, messy and loving two year old you could ever meet. When she falls over, she gets straight back up and tries again with a huge smile on her face. We couldn’t be more proud of her.
SDR is not currently funded on 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 money we raise will go towards the costs of the surgery in America, travel and accommodation, post-operative intensive physiotherapy and the physiotherapy equipment Emmy will require for her rehabilitation.
Our family’s dream is to see Emmy doing the simple things in life that are often taken for granted – walking alongside her big sister, playing in the park and jumping in muddy puddles like her favourite character, Peppa Pig!
We will be fundraising through Just4Children (registered charity no. 11644773). Just4Children will securely hold all of Emmy’s funds and pay all invoices directly.
Thank you for reading our story. We will be forever grateful for your support.
Love Dave, Carly, Isla and Emmy xxx