By Natasha Nobay
Jack’s Butterflies is a charity that was brought to life by one family’s journey with rare disease. Rachel and Paul Gates are the parents of six beautiful children, one of whom has Ohtahara Syndrome; a neurological disorder which is characterised by epileptic seizures. There are only a handful of children currently diagnosed with this condition in Australia. 80% will pass away before their 2nd birthday. Those who live beyond 2 will be severely disabled with little to no development and have many health complications.
Rachel and Paul excitedly welcomed the arrival of their fourth and fifth children (twins) in 2011. The birth of Emily and Jack was celebrated with much joy and excitement. However, soon after Rachel and Paul were given the prognosis that their darling Jack had been born with a disorder in the form of severe epileptic seizures (often hundreds each day) – later they were given the defining diagnosis of Ohtahara Syndrome.
With the prognosis that Jack was unlikely to survive his infancy, the Gates family began their journey as a Rare Disease family. In and out of hospitals, working to make the life of Jack as long and as comfortable as possible, the simple joys that come with being a parent to newborn twins and three other wonderful children was stolen from them for many years.
Thankfully Jack continued to defy the odds and the prognoses given in regards to his life expectancy. He is now seven years old and his family has been made stronger by the difficulties that it has endured.
A sixth child joined their happy ranks three years ago and the family continues to thrive on their shared love and combined dedication that binds them.
Motivated by her family’s journey, the struggles, the joy and the lessons learnt by living through Jack’s illness, Rachel made the decision to set up a charity that would work at supporting families like her’s that had been given membership into the Rare Families Club.
And so Jack’s Butterflies came to be.
Founded on an understanding of the incredible difficulties, heartbreak and turmoil that comes with having a child diagnosed with a life-limiting rare disease, Jack’s Butterflies works to address the imbalance between the needs of rare children and their families and the service and support currently made available to them.
Current figures suggest that more than 400,000 Australian children are affected by rare disease. Many of these families are not aware that their child falls under the label of having a rare disease.
Sadly the majority of rare diseases are incurable and many tend to be life-limiting. Finding a diagnosis can vary in length of time because most of the time it is about compiling all of the symptoms and then researching which ‘known’ syndrome/disease the child best identifies with.
For many families, their child remains undiagnosed because they can’t find a ‘box’ to fit. Due to this, rare disease families are often shelved by our hospitals and our government as the incurable and so the support given to them and their families is minimal.
Families are given little more than the option to simply wait for their beloved children to die.
The expectation and turmoil that comes with this waiting game is understandably traumatic and incredibly difficult. Jack’s Butterflies works to address the difficulties that families encounter from pre-diagnosis to the often inevitable goodbyes.
Championing the needs of those currently ignored or undervalued by our government, charities and support networks, Jack’s Butterflies works to provide assistance to rare families and to work as an advocacy group to address the shortfalls and concerns encountered by them.
A mantra adopted by Jack’s Butterflies comes from Rose F Kennedy and highlights a key consideration in this charity’s mission: “Life isn’t about milestones, but of moments.”
It is with this in mind that Jack’s Butterflies strives to bring light, love and the making of memories to the rare disease children and families that it supports. Creating joyful moments that work to address the hardships, needs and wants of keeping a rare disease child alive and their family together and happy.
Jack’s Butterflies’ passion for making a positive difference to the lives of rare children and their families is inspirational, heartfelt and true.
If you have a child living with a rare disease or you know of families that may be interested in reaching out to us and finding out how we can make a difference in their lives please get in touch. We’d love to hear from you and introduce you to Jack’s Butterflies.
Further Details/ContactRachel Gates – Jack’s Butterflies
Phone 07 3359 9004Email – [email protected]