Monday, 21 May 2018
It’s no secret that Little Heroes Foundation is passionate about supporting seriously ill children and their families that are doing it tough. It’s how the foundation began back in 1996, and it is how we will continue to be, to ensure children get the support and treatment they deserve.
Since the opening of our Centre for Robotics and Innovation in 2016, Little Heroes Foundation has a renewed focus on the needs of our families and we have been concentrating our fundraising efforts on our Little Heroes Care program, before we embark on a new major project.
Through this process, we have noticed that many families with a child that has a particularly rare condition or illness are forced to search beyond our borders for answers and potential treatments for their child. Recently, we were introduced to four extraordinary young children, who’s families are doing exactly that, and are desperate for funding to give their child access to the world’s best care that is unfortunately not yet available in Australia.
Although it would be ideal for families to be able to stay in Australia for their treatment, we understand that this is not always possible. Therefore, we are doing what we can by providing a platform for these families to tell their stories, and helping them reach more people like you, who can help make a difference. Read their stories below.
Born with a congential eye disease known as Leber's Congential Amaurosis, three-year-old Amaaya lives in almost complete darkness, as she is now colourblind and has only 10% vision available due to her condition. However, there is still hope! Researchers in Philadelphia is the United States are planning to trial test treatments on mutations caused by the CRB1 gene - the same gene that is responsible for Amaaya's condition. This follows successful trial results on the RPE65 gene. The young family are furiously trying to save enough money to travel to Philadelphia, to determine Amaaya’s eligibility for the trials that may be able to change the young toddler’s life.
Little Amaaya was featured in a story in The Advertiser back in April, and currently has a fundraising page dedicated to raising money to send her to the states to see if her eyesight can be saved.
Little Charlie was born with a Noonan Syndrome, a condition that affects her heart, brain, muscles, speech and immune system. As things have progressed for Charlie, she’s now unable to walk very far (often relying on a wheelchair) and experiences some symptoms that that doctors don’t understand yet. With each passing year, Charlie has faced more challenges, some of which are very unpredictable. Having Noonan Syndrome increases the risk of cancers, kidney issues, liver issues, seizures, allergies, heart and lung problems, digestive issues and the list goes on. Unfortunately for Charlie and her family, there is no known treatment or cure for Noonan Syndrome.
Charlie are her family have been offered an incredible opportunity to be involved in research study in America, and to attend a conference about Noonan Syndrome. The research will involve three intensive days at Stanford University, California. The conference, where Charlie will meet doctors and geneticists and experts in the field is in Phoenix, Arizona and runs for another three days.
Charlie are her family are also currently fundraising to make this journey to the US possible, by riding 1,900km from the Barossa Valley to Mountain Creek in Queensland. Their ‘Ride for Charlie’ aims to support their fundraising efforts, so that they can make life a little easier for Charlie, and for all sufferers of Noonan Syndrome.
Six-year-old Maya was born with Diplegic Cerebral Palsy, meaning the part of her brain that controls movement in her lower body is damaged. The distorted messages between her muscles and brain cause Maya's muscles to continuously contract and shorten, causing permanent stiffness or tightness in her legs and interfering with normal movement. This type of movement causes a condition called Spasticity.
For Maya, simple activities take a lot of effort and concentration, and often she needs help with dressing, putting on shoes and getting in and out of the car, among other challenging daily activities. Over time, there is a high chance this chronic tightness will cause pain, take some of her independent movement away from her and lead to multiple orthopaedic surgeries.
However, an operation called Selective Dorsal Rhizotomy (SDR) at St Louis Children's Hospital, in Missouri, USA, offers a potential solution. SDR is delicate spinal surgery that involves cutting specific sensory nerve fibres in the spinal cord and disrupting the signals that cause spasticity. The procedure will give Maya the best chance of living a pain-free life without the need for multiple surgeries on her muscles, tendons and joints in the future.
Maya and her family are fundraising to cover the cost of the surgery, hospital care, equipment and locating the family to the US for six weeks, plus intensive rehabilitation for Maya.
At just six months old, five-year-old Amelia was diagnosed with Spastic Diplegic Cerebral Palsy. Like Maya, Amelia’s condition affects her lower limbs and gives her tight muscles, which makes movements like walking and standing unaided extremely difficult.
Unfortunately, the condition also causes pain and cramping in the lower limbs, which affects her ability to keep up with her friends and her little brother.
On top of her ongoing challenges with Spastic Diplegic Cerebral Palsy, Amelia was also born with an Atrial Septal – a defect that causes a hole in the wall between the heart’s upper chamber. When she was 3, Amelia had open heart surgery to repair this birth defect.
Amelia’s family are hoping to raise funds for a life-changing Selective Dorsal Rhizotomy (SDR) surgery in St Louis, USA so she can walk, dance, stand and run independently. This surgical procedure is the only procedure that provides a reduction of spasticity in cerebral palsy, and will allow Amelia to live life to the fullest.
Amelia’s family hope to raise funds to cover her surgery, therapy, flights and accommodation to the United States for 6 weeks.
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