Charity For Children Living With Rare Diseases
Jack’s Butterflies is a newly established children’s charity which provides support to children and their families affected by a life-limiting rare disease. Founded on an understanding of the incredible difficulties, heartbreak and turmoil that comes with having a child living with a rare health condition, Jack’s Butterflies works to address the shortfalls in service and support currently offered to families facing these challenges.
Ironically rare diseases are actually common. Current figures suggest that more than 400,000 children and more than 1.5 million adults in Australia are affected by a rare disease. However, many families aren’t even aware that their loved one falls under the label of having a rare disease.
The challenge of a rare disease
Rare disease children are born with conditions where cures just do not exist. Sadly, rare diseases tend to be life limiting, with the majority of these conditions diagnosed soon after birth and with those affected for the most part not living beyond their childhood years. In recognition of this, 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 often given no choice but to wait for their beloved children to die. The hardship and emotional turmoil that comes with this waiting game is incredibly difficult for rare disease families. Jack’s Butterflies exists to champion the needs of those who are currently ignored or undervalued by our government, charitable organisations and sponsorship avenues.
Jack’s Butterflies is here to support families
Set up by Rachel Gates as a result of the journey that she and her family have travelled since the birth of her son Jack, who was born with Ohtahara Syndrome in 2011. Ohtahara Syndrome is a severe form of epileptic encephalopathies that is onset within the first 3 months of life and is characterized by seizures (often hundreds of times a day), sadly eventually leading to death during childhood. Whilst Jack’s condition was the catalyst to Jack’s Butterflies being established as a charity, it is merely a snapshot of the huge number of conditions that exist under the banner of “rare disease”.
This current chapter of the Gates family’s story began soon after their beautiful Jack was born. Rachel and her husband Paul were told to prepare for their son’s death as he was unlikely to survive his first weeks. They were eventually given permission to take their beloved boy home to wait for the inevitable, to spend time as a family, to say goodbye and to mourn for Jack and the dreams and hopes that they had built for him before he was born. These words took away their ability to just enjoy being parents to Jack and they stole so much potential joy from the Gates family. However, amazingly Jack’s strength and the love that surrounded him was stronger than the continually upgraded prognoses of his life expectancy. To this day Jack has miraculously continued to defy the dates given by his specialists and we all live in hope that his courage, strength and determination continue to challenge the medical expectations and keep him present in our lives for many, many years to come.
This personal experience became the catalyst to the idea of Jack’s Butterflies. The Gates family’s own suffering and difficulties inspired them to want to help others, to provide them with the resources, tools and support networks that they were so desperate for themselves. Sadly and unfairly the assistance and understanding given to many rare disease families is inadequate. Medical conditions that are seen to be familiar or more relevant are given more financial backing and more exposure, with those dealing with a rare disease given less consideration.
How Jack’s Butterflies plans to help
Jack’s Butterflies’ range of services and assistance looks to not just assist rare disease children and their families with everyday challenges, but also to equip them with the support to extend their lives beyond the daily isolation and confines of hospitals, social services and their own homes. Established in Brisbane earlier this year, Jack’s Butterflies will be rolled out to the rest of Australia over the next four years.
As a new charity working to assist “rare disease families” Jack’s Butterflies is actively introducing itself to the public and those who may be able to benefit from the range of services and support offered by them and currently not available elsewhere.
Jack’s Butterflies‘ initial rollout of programs will include running activity-based support groups geared towards overcoming social isolation, supplying essential need hospital stay packs to parents of children who are admitted through emergency and providing these parents with healthy and nutritious meals whilst their children are hospitalised. Jack’s Butterflies wants to help lighten the stresses that come with families living with a rare disease.
Meeting Rachel Gates for the first time you are instantly drawn to her passion for making a positive difference. Her own personal experience, understanding and empathy for those walking a similar road to her own family, both defines and drives her in her quest to both bring life to Jack’s Butterflies and make a joyful difference to as many lives as possible. “Losing a child or learning to live knowing that you will lose your child will always bring profound sadness, depression, anxiety and stress. And whilst we can’t prevent the inevitable, we want to make the journey brighter and bearable. We want to provide our families with the tools they need to not just merely survive the journey but to thrive. So that when they look back, they have a plethora of memorable moments that are not just consumed by profound sadness and heartache.”
Jack’s Butterflies services include:
- Support groups – families, siblings, parents (Mums and Dads together and separately), carers/hospital staff/support workers affected by the death of a rare disease child.
- Hospital Care Packs – made available to parents whose children are admitted into the children’s hospital via Emergency who do not have time to grab the basics (such as toothbrush, toothpaste, razor, facecream, brush) to make hospital stays that little bit easier. Initially this will be provided to rare disease families, however, it is hoped that this will eventually be made available to all parents on the PICU wards.
- Hospital Meal Packs – made available to parents whose children are admitted into the children’s hospital via Emergency to provide them with strength and to reduce the financial burdens that often accompany such hospital visits (such as potential loss of income, childcare arrangements for other children, parking etc.). Initially this will be provided to rare disease families, however, it is hoped that this will eventually be made available to all parents on the PICU wards.
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 and work to brighten your journey.
Written by Natasha Nobay
Rachel Gates – Jack’s Butterflies
Mobile 07 3359 9004
Email – [email protected]