Charlie Grace was born three months premature weighing only 900 grams. She was brought into the world early via caesarian at The Mater Mothers Hospital in Brisbane on St Patricks Day 2013.
Charlie had a traumatic start to life. A roller coaster ride of ill health, rare complications and misfortunate 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… but after genetic testing, it was revealed that Charlie had a rare Genetic condition called Mowat-Wilson Syndrome.
Mowat-Wilson Syndrome (MWS) is so rare that there are less than 200 diagnosed cases Worldwide. MWS affects intellectual & 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, Hirschsprung’s 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 & occupational therapists, nutritionists, cardiologists, neurologists and music therapy.
Charlie Grace now, at two 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 a 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!
Read more about Mowat-Wilson Syndrome
If you would like to help give Charlie the support she needs please donate to Sunshine Butterflies. Sunshine Butterflies is a disability support service and charity supporting babies, kids, tweens, teens & adults with a disability and their families. They are a registered charity and not for profit organisation.