Countdown to Ciara's SDR Surgery
Let’s get Ciara walking – a journey of hope, love and faith
Ciara and her identical twin sister were born 12 weeks premature on March, 21st 2012 in Aarhus, Denmark. Four weeks before their birth their mom was hospitalized due to difficulties with the pregnancy, and needed to rest in bed 24/7.
Ciara was the first to be born via an emergency c-section, weighing 1086g (2.39 lb), almost 14% heavier than her twin sister. In contrast to her identical twin, Ciara didn’t receive another injection of lung surfactant after the delivery, as doctors believed her to be strong enough. A standard x-ray of the lungs and an ultrasound of the head one week later should prove them absolutely wrong: Ciara’s lungs hadn’t unfolded properly after birth, and the lack of oxygen was causing irreversible brain damage which couldn’t be stopped but would stop on its own at some point.
After 4 long weeks of waiting and praying, the weekly ultrasound showed the final extent of the damage caused. Ciara had suffered severe brain damage on both sides of the brain and doctors didn’t expect her to be able to do much when growing up (one year later she was diagnosed with cerebral palsy). We lived at the NICU for 3 months and that’s where our journey began. A journey driven by hope, love and faith.
Ciara has trained since she was 3 months old. Countless hours of intensive rehabilitation trainings in Germany and Slovakia, physical therapy 3-4x a week, occupational therapy, speech therapy, Galileo vibration plate training, conductive education, Lokomat robot walking training, hyperbaric oxygen chamber therapy (HBOT), myoreflex therapy, acupuncture, Brugger biofeedback, American chiropractic, hippotherapy, Halliwick rehabilitation swimming, yoga for the special child – all has helped Ciara on her way to walking. She defeated all odds when taking her first steps in a so-called walker at the age of 4 and learning how to sit up by herself at the age of 5.
Today Ciara is 7 years old – and as happy and self-confident as she can be. Together with her twin sister she attends a regular school at her hometown, accompanied by a helper. In her free time she loves horseback riding and singing in a kids choir. She is determined to learn to walk independently, being able to do all that her friends do effortlessly. Her biggest wish is to be able to walk to the Italian ice cream store together with her friends to eat ice cream.
Ciara’s enemy is the spasticity in her legs, binding her to a wheelchair, which is caused by her brain damage. Spasticity interferes with all voluntary movement, making every single step a strain. Children with cerebral palsy usually require multiple orthopedic surgeries due to muscle contractures, hip subluxation and foot deformities, and suffer from pain later on in life, all caused by spasticity.
In the 1990’s the American doctor T.S. Park pioneered a spinal surgery called selective dorsal rhizotomy (SDR) which effectively removes spasticity and thereby prevents pain. It also greatly reduces the need for repeated surgeries throughout a childs’ life due to growth spurts. Until today, more than 4,000 families from all over the world traveled to St. Louis, Missouri to get this truly life-changing surgery for their child.
Recently, Ciara went through the screening process at St. Louis Children hospital. She was accepted as Dr. Park’s patient and she is on a waiting list for the SDR surgery in June 2020. It’s a major surgery but after intensive therapy five days a week for a year, Dr. Park predicts that Ciara will be able to leave her wheelchair behind.
The surgery, the intense rehabilitation afterwards and the regular follow up appointments are highly costly, and we can’t make it on our own anymore. That’s why we are reaching out to you asking for your help. We need to raise 85.000 EUR (95.000 USD) to help our daughter Ciara’s wish come true: to walk independently. To be independent. To be pain-free. For life.
Will you help her wish come true? Please donate. Every single donation, big or small, helps!