Russell Matheson (Macarthur, Liberal Party) Share this | Hansard source

I rise to speak about the heartbreaking disease spinal muscular atrophy and the devastating effect it can have on a child and their family. To help raise awareness of SMA I would like to share with you the story of a little girl named Brittney McKenna, from my electorate. Brittney's parents, Debbie and Andrew, described her as a social butterfly, a bright, bubbly and beautiful young girl with an infectious smile who always saw the glass as half full. She loved people and had the ability to make friends with anybody who crossed her path. I first met Brittneysix years ago and her zest for life, cheeky smile and bright personality have left a lasting impression on me that I will never forget. Sadly, Brittney was nine years old when she died in 2008—a beautiful life cut too short under heartbreaking circumstances. Brittney was diagnosed with SMA when she was 15 months old after more than a year of testing and weekly monitoring due to weak muscle tone, loss of deep tendon reflexes and an inability to walk, crawl or roll on her own. When she was diagnosed at Sydney Children's Hospital, her parents were told there was no cure and no treatment, and that the condition was terminal. Debbieasked all the basic questions. Would her daughter ever walk? Would she grow up? Would she have children? She was told that Brittney would never walk, would not live long enough to have children and would face huge respiratory complications throughout her life. I have two beautiful daughters myself and cannot imagine being told that my baby girl would probably die before she finished primary school.

After her diagnosis, the next eight years for Brittney and her family were intense. In total, of the nine years of her life, Brittney spent more than five years in hospital. SMA is an extremely difficult disease to live with. The loss of nerves in the spinal cord causes muscles to become weaker over time. The weakness not only affects the arm, leg and neck muscles but also the muscles which assist in breathing and eating. Brittney's muscles were so weak that she could not eat without choking and could not cough when she needed to and, at times, she struggled to breathe. She had 41 surgeries in her short life and suffered from severe scoliosis, chronic pain, ongoing pneumonia and multiple lung collapses. She had central apnoea which caused her to stop breathing in her sleep and her mum would often have to resuscitate her.

Children living with SMA are very bright, with above average intelligence, but unfortunately their bodies cannot keep up with them. Brittney was only four when, knowing she was going to die, she asked her mum, 'When I go to heaven, can you catch a plane to visit me when I'm lonely?'—a heartbreaking question that no parent should ever have to answer.

While telling Brittney's story, I must also mention the lack of funding and respite for families living with SMA. There was limited support offered to Brittney's family and no respite because she was classified as too high medical support and under palliative care. Brittney's mum was proficient at all her medical needs, including IV medications. At five years old, Brittney had IV feeding fluids through a central line in her heart, 24 hours a day, a tube in her stomach for some of her medications. She also had a large bowel completely removed at age seven. In between all the years spent in hospital, and the 41 surgeries and the 24-hour intensive care for their daughter, Debbie and Andrew also had to do their own fundraising for equipment, and home modifications to support Brittney. Life by the hospital bed included a constant struggle with red tape, bureaucracy, budgets and politics in an attempt to get some support. Brittney's longest single admission to hospital was 21. Her dad, Andrew, was working interstate to support the family financially. Her mum, Debbie, was by her hospital bed 24 hours a day. Their son Liam was passed around between family and friends to give him some stability and routine in life. With the help of the community, the family raised hundreds of thousands of dollars to give Brittney the life she deserved. It is no wonder that they were left financially, physically and emotionally exhausted.

It is the lack of government support and the memory of her beautiful daughter that has inspired Debbie to work with other families who have children living with disabilities and illnesses in Macarthur. She is a staff member of KU Starting Points—Macarthur, a not-for-profit organisation in my electorate that runs several programs and a great support network for the local families. Debbie said that her wish was for all children to have the right to be their best and to know no boundaries to their abilities. Despite the heartache and pain Brittney's family have been through, her parents say they were blessed to have such a beautiful daughter who touched the lives of so many and left a lasting impression on the Macarthur community.

I hope that telling Brittney's story will raise awareness of SMA and encourage families living with the condition to take one day at a time and enjoy those precious moments with their children. And while aeroplane trips to heaven might not be possible, I am sure Brittney is watching over her family with an enormous amount of pride as they strive to make this world a better place for all children living with disabilities and their families. Rest in peace, dear Brittney; you will always be remembered by your family, friends and community. I thank the member for Fowler and other members for bringing an awareness of SMA to this parliament.

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