This is the story of our gorgeous 2 1/2 yr old daughter Charlie Grace.
Charlie was born three months premature weighing only 900grams. She was brought into the world early via caesarian at The Mater Mothers Hospital in Brisbane on St Patrick’s Day 2013. Charlie had a traumatic start to life. A roller coaster ride of ill health, rare complications and unfortunate events. During her 92 days in NICU at the Mater, Charlie suffered multiple infections, surgeries, a broken arm, four blood transfusions and other medical complications and challenges. At each turn Charlie defied the odds and finally was discharged home. She was in a fragile state for a long time at home and required a Stoma bag and 24 hour a day Oxygen. It was a constant struggle for a long time with many set backs and return visits to hospital. Gradually Charlie grew healthy enough to no longer require the oxygen and Stoma bag.
Charlie’s development was significantly slower than most. It was hoped that this developmental delay was due to her rough start, however after genetic testing, it was revealed that Charlie had a rare Genetic condition called Mowat-Wilson Sydrome.
Mowat-Wilson Syndrome (MWS) is so rare that there are less than 200 diagnosed cases world wide. MWS affects intellectual and Physical development. Many children with MWS have global developmental delays and speech is absent or severely impaired. It also can be accompanied with heart defects, Hirschsprungs Disease, Epilepsy, Microcephaly and other anomalies. On the flip-side, people with Mowat-Wilson Syndrome ALWAYS have a sunny disposition, show their affection openly to those they love and are very social. They understand more than what they are able to communicate.
Despite the continual threat of seizures, physical disability, poor sleeping patterns, feeding issues and other daily battles, Charlie’s determination and excitement for life only grows larger and brighter. She receives ongoing treatment from Physiotherapists, speech and occupational therapists, nutritionists, cardiologists, neurologists and music therapy.
We have set up this page to try and ease some of the financial pressures and help Charlie get everything she needs. Specialized equipment such as standing frames, walking devices, bathing & showering aids, special needs prams, beds, home modifications and lots of therapies (such as physio) are some examples. Charlie is not yet crawling, walking or sitting. We are working toward getting her to move independently. Charlie will ALWAYS require 24/7 care for the rest of her life. She cannot attend daycare so In-home support and respite for us is very important and positively impacts the quality of care that Charlie receives.
One of the biggest decisions we face at present is whether to renovate our home to suit Charlie’s needs or in the near future move to a home and modify. We love our house, but it is not suitable for Charlie due to having stairs and various other design issues.
Finally, it has to be said that we’re not really sure exactly what needs Charlie will have in the future given that her Syndrome is so rare and not a lot known about it. However, her greatest need of all is LOVE and she will always have plenty of that!!
Charlie, at two and a half years old, continues to defy the odds. She is a very happy little girl and takes great delight in the small things. Her laugh is infectious and she has great sense of wonder. On meeting Charlie, one will realise how special it is to be in the presence of someone who has the ability to be truly joyful and display their love and affection unconditionally. In some ways she is the embodiment of what we all aspire to be – Happy!
Thank you for your support and generosity! If you would like to follow Charlies journey please like her page on Facebook – Unite for Charlie
To Donate to Charlie Grace Harris, please use the form below. Thank you for your generosity.
Marayke Jonkers, 36, is a retired Paralympic medal winning swimmer, paratriathlete and founder of Sporting Dreams, a grants program which helps athletes with disabilities. Unfortunately after 20 years as an elite athlete Marayke has been diagnosed with an overuse injury to her arms and now n...