That is what has happened to this kind, hardworking family, The Goughs.
Kate and Grant were hesitant on a fundraiser because this gorgeous couple never want to put anyone out.
With Kate unable to work, Grant back at work (missing out on moments at home with Oakley and their beautiful little Arabella) they need this support (we know we would!)
The family is so grateful their daughter is receiving the only treatment currently available in Australia. However, groundbreaking gene therapy is available overseas and currently costs $3.3M for Aussies to access. Your donations would support the couple to help finance this procedure if it eventuates in the future (we will keep you updated).
Kate and Grant want to be open with how they will spend the money. First and foremost will be anything to support Oakley’s treatment and quality of life. They are also hoping to move closer to family for much needed support, find a home that can accommodate Oakley's needs and advocate for SMA to be added to the newborn screening test in Australia.
This is their story - written by Kate:
Our littlest one was diagnosed with Spinal Muscular Atrophy (SMA), which is a rare, genetic condition and the children’s version of Motor Neurone Disease (MND). Oakley has type 1, the most severe type.
Treatment has come a long way in the last couple of years, but it is new and we don’t know what Oakley’s life will look like. If she does live a longer than expected life, it will be physically very challenging and it is most likely that she will never walk.
Within an hour of learning Oaks had SMA she was fed through a tube. Within a week we were recommended a ventilator for her breathing support.
We know 2020 has been a tough year for many. We aren’t sharing this for sympathy, rather we want to share our journey with you and we want to join the many unfortunate but incredible families that have gone through our heartbreak, in raising awareness of SMA and ensuring more is done so other little ones don’t end up in Oakley’s situation.
While our hearts have been broken, they have also been warmed over and over by the amazing amount of support, kindness and generosity we’ve received from our family and friends. We are thankful to not be in this fight alone and we know we have a lot to be grateful for.
- Debra Huntley
- Teghan Couper
- Shannon Ross
Organizer and beneficiary
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