Planting a kiss on the forehead of her doctors is the way sweet Summer Harris shows her affection.<\/p>\n
For the team of researchers at the Murdoch Children\u2019s Research Institute (MCRI) charged with unlocking the five-year-old\u2019s rare dementia disorder, it\u2019s a moment that melts their hearts and takes their job from petri dish to the personal.<\/p>\n
When you understand Summer\u2019s parents, Jeanette and David, were told their little girl would not live much beyond her fifth birthday, it\u2019s even more heartwarming. <\/p>\n
The Harris family is sharing their story as part of news.com.au and The Australian\u2019s Think Again campaign<\/a> which is backing calls for a National Child Dementia Unit (NCDU).<\/p>\n Such was the family\u2019s determination to see their daughter thrive beyond her devastating diagnosis that she\u2019s here today \u2013 the poster child of Hope Starts Here, a new documentary hosted by Fox News correspondent Benjamin Hall, that follows three families affected by KIF-1A Neurological Disorder [KAND] in Australia and the US.<\/p>\n Affecting muscles, nerves and cognition, Summer\u2019s specialists initially put her symptoms down to cerebral palsy.<\/p>\n After passing all her newborn testing, by two, she could not walk, sit herself up or speak. When her vision faltered, her mother knew there was more to the story.<\/p>\n An MRI and blood tests sent to the US would take almost a year to confirm KAND.<\/p>\n \u201cThere were only 23 children in Australia at the time, and 600 worldwide,\u201d Mrs Harris said.<\/p>\n \u201cSo it was an ultra rare mutation. The pediatrician didn\u2019t know anything about it \u2026 and that\u2019s not what you want to hear,\u201d she said.<\/p>\n MORE FROM THINK AGAIN<\/a><\/p>\n \u2018Perfect life\u2019 blows up in an instant<\/a><\/p>\n Chilling sign that led to killer diagnosis<\/a><\/p>\n Devastating truth behind family snap<\/a><\/p>\n Working off little clinical information, the Harris family started their own foundation, looking for answers and a way out of the isolation of their daughter\u2019s disorder.<\/p>\n That\u2019s when they found the MCRI\u2019s research, led by scientist Dr Simran Kaur, whose team is using advanced genetic technologies to identify KAND variants more rapidly and accurately.<\/p>\n \u201cTime is a big factor \u2013 time and funding \u2013 that\u2019s what we\u2019re constantly chasing here \u2026 to help find treatments and hopefully, improve the qualify of life of these children,\u201d Dr Kaur said given the life-limiting nature of the disease<\/p>\n After enduring their own \u201cdiagnostic odyssey\u201d, Summer\u2019s parents used their foundation website to connect the researchers with families \u2013 creating a community for the care of their KAND kids.<\/p>\n \u201cFamilies have become an incredibly important part in the research because their lived experiences can help researchers better understand KAND, identify patters and ultimately find answers,\u201d Mrs Harris said.<\/p>\n KAND is just one of 145-plus childhood dementia disorders being studied, with MCRI\u2019s chair of genomic medicine, Professor John Christodoulou eager to set up a National Child Dementia Unit \u2013 to share data, fast-track findings and concentrate expertise to unlock these disorders.<\/p>\n Educating GPs and paediatricians is also critical, with the average doctor unlikely to see more than one child with dementia in their whole career.<\/p>\n \u201cPeople are shocked at the concept that a child could actually have dementia,\u201d Prof Christodoulou said.<\/p>\n \u201cWe\u2019ve got to get over that initial shock and educate clinicians about these disorders. What are the red flags that they should look for? And what are the steps that they could follow to help expedite a diagnosis? That\u2019s really the first critical step.\u201d<\/p>\n The MCRI hosted a family day at its Melbourne headquarters earlier this month, screening the documentary and reuniting its producers with the families involved. <\/p>\n \u201cThey are so brave with every opportunity to talk about this disorder and share their experience for the benefit of others,\u201d Dr Kaur said.<\/p>\n For Mrs Harris, giving up hope is not an option.<\/p>\n \u201cI have to have hope in order to function every day,\u201d she said.<\/p>\n \u201cAnd I do, in my heart, I believe there will be a treatment to help and one day, a cure \u2026 we just have to keep trying for our children.\u201d<\/p>\n Click to watch Hope Starts Here screening now on Tubi<\/a><\/p>\n