My name is Jennifer. I am an Australian/American photo journalist and a single mother raising my son Alexander who is a child with special needs. His rare genetic condition, Joubert Syndrome, means that he is facing a limited life expectancy. I am making a film to share the story of Alexander's life and our journey together as we've traversed the healthcare system and learned to advocate and innovate to manage his care. The film explores themes of fearlessness, resilience and learning to part with ideals as well as a view into the Australian medical system.  With the bulk of the shooting done using my own funds and the generosity of professionals who have volunteered their time and resources, I am now seeking your assistance for completion funding. In order to finalise the film, I need to shoot the last of the footage, pay for licensing of music and cover the cost of editing and distributions costs. My goal is to submit this work to international film festivals in August 2021, meaning I have just months to see this project through.  I never expected to have Alexander and now that he has changed my life forever, I want to share his story in the hopes of helping other families and offering the wider community insight into day-to-day life with a child who requires 100% care. Your donation would mean so much to us both as this film represents an opportunity to document Alexander's life in order to create awareness for others. learn more about the film and the story at: <a href="https://www.expectingtheunexpectedfilm.com"><a href="https://www.expectingtheunexpectedfilm.com" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.expectingtheunexpectedfilm.com</a></a> View the documentary trailer <iframe media_type="0" media_id="5qEkVHmvt_A" class="youtube-replace" title="YouTube video player" style="margin-bottom:20px;width:560px;height:315px;" src="//www.youtube.com/embed/5qEkVHmvt_A/?rel=0" frameborder="0" allowfullscreen="1"></iframe> <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1612575932750477_r.jpeg" alt="51477060_1612575932750477_r.jpeg" width="100%" media_type="3" />34 weeks pregnant with Alexander and so excited to become a mother and meet the little guy.  <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_161257614163667_r.jpeg" alt="51477060_161257614163667_r.jpeg" width="100%" media_type="3" />Alexander was born 35 weeks +2 days, he was a tiny 1.6kg (3.3lbs), I was so happy to meet him. I was told that he had fluid on his brain and a complex range of issues. Feeding was hard for him so he had a feeding tube that allowed me to give him my breastmilk.  <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1612576054591797_r.jpeg" alt="51477060_1612576054591797_r.jpeg" width="100%" media_type="3" />Alexander spent 5.5 months in the Neonatal Intensive Care Unit. His veins were hard to access, so he ended up with a scalp line put in and a nasogastric tube to manage his feeding. He was weak and needed a lot of support from the start.  <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1612579222958976_r.jpeg" alt="51477060_1612579222958976_r.jpeg" width="100%" media_type="3" />6 months old, we had to visit the American Consulate Office in Sydney, he received an American flag.  <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1612579454115880_r.jpeg" alt="51477060_1612579454115880_r.jpeg" width="100%" media_type="3" />A friend who is a pediatric physiotherapist told me about the importance of early intervention. With her advice and support, Alexander started physiotherapy and occupational therapy at six months old. This is one of many reminders that people come into our lives at just the right time. It also taught me to be open to advice and go with the flow.  <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606200254750563_r.jpeg" alt="51477060_1606200254750563_r.jpeg" width="100%" media_type="3" />Sleeping on a consult table in the back of emergency during a visit to the emergency room. These drop-everything-and-go visits have become somewhat routine for Alexander and me. <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606200345171258_r.jpeg" alt="51477060_1606200345171258_r.jpeg" width="100%" media_type="3" />Alexander with his NG tube at home in time for his first Christmas.  <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606200439980149_r.jpeg" alt="51477060_1606200439980149_r.jpeg" width="100%" media_type="3" />Alexander came home at 5.5 months old, he weighed only 2.3kg. <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606200410907407_r.jpeg" alt="51477060_1606200410907407_r.jpeg" width="100%" media_type="3" />One of many hospital stays over the last five years— it has become our second home.  <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_160620052620124_r.jpeg" alt="51477060_160620052620124_r.jpeg" width="100%" media_type="3" />Alexander has weak bones as he's never bared much weight. He ended up with a fractured leg, spending two weeks in traction at hospital.  <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_160620055162178_r.jpeg" alt="51477060_160620055162178_r.jpeg" width="100%" media_type="3" />The happy moment of discharge after a hospital admission.  <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606200594811360_r.jpeg" alt="51477060_1606200594811360_r.jpeg" width="100%" media_type="3" />Testing while in hospital.  <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606200632155262_r.jpeg" alt="51477060_1606200632155262_r.jpeg" width="100%" media_type="3" />Trying to find a viable vein is still an ongoing problem with each hospital admission. It often takes two people to hold him down and the support of many devices (like red lights and ultrasound) to find a vein they can tap into for a blood draw or IV access.  <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606200663815206_r.jpeg" alt="51477060_1606200663815206_r.jpeg" width="100%" media_type="3" />Starting  school in March 2020 . New milestones, I never was sure we would make. A happy day!!  <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606200690818334_r.jpeg" alt="51477060_1606200690818334_r.jpeg" width="100%" media_type="3" />Connecting with nature and the outdoors.  We enjoy hiking and camping.  <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606200712924281_r.jpeg" alt="51477060_1606200712924281_r.jpeg" width="100%" media_type="3" />Unexpectedly spending Mother's Day in hospital, May 2020. <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_160619782247452_r.jpeg" alt="51477060_160619782247452_r.jpeg" width="100%" media_type="3" />Alexander at the Children's Hospice in 2016 while I went to have surgery. It was the only place that he could be safely cared for.  <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606198199416217_r.jpeg" alt="51477060_1606198199416217_r.jpeg" width="100%" media_type="3" />Alexander at occupational therapy, 2016. <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606203013710633_r.jpeg" alt="51477060_1606203013710633_r.jpeg" width="100%" media_type="3" />Another sleepless night. Listening to his breathing, watching, waiting, worrying.  <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606195838801288_r.jpeg" alt="51477060_1606195838801288_r.jpeg" width="100%" media_type="3" />Camping, 2020.  <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606195893271313_r.jpeg" alt="51477060_1606195893271313_r.jpeg" width="100%" media_type="3" />An early morning walk in the wheel chair during our camping trip, 2020. <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606196040351961_r.jpeg" alt="51477060_1606196040351961_r.jpeg" width="100%" media_type="3" />Our 'hospital on wheels' sleeping set-up while camping.  A breathing machine and feeding pump for overnight hydration operate on a portable battery.  <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606196254817515_r.jpeg" alt="51477060_1606196254817515_r.jpeg" width="100%" media_type="3" />Another post-operation moment, still intubated.  <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606196298925746_r.jpeg" alt="51477060_1606196298925746_r.jpeg" width="100%" media_type="3" />Camping setup indoors when we went away on a family trip, 2019. <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606196725822153_r.jpeg" alt="51477060_1606196725822153_r.jpeg" width="100%" media_type="3" />Off on an adventure in Tasmania with mum. (Photo by Krunal Padhiar) 2019.  <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606196842122132_r.jpeg" alt="51477060_1606196842122132_r.jpeg" width="100%" media_type="3" />Meeting a wombat for the first time in the wild, 2019.  <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606196795180064_r.jpeg" alt="51477060_1606196795180064_r.jpeg" width="100%" media_type="3" />Learning to sit-up at the beach, 2019.  <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606196937638424_r.jpeg" alt="51477060_1606196937638424_r.jpeg" width="100%" media_type="3" />Trying to immerse him in the sand for a sensory experience. He often struggles with different textures being against his skin.  <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606200754764461_r.jpeg" alt="51477060_1606200754764461_r.jpeg" width="100%" media_type="3" />Mum in the hospital elevator.  <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606200831274336_r.jpeg" alt="51477060_1606200831274336_r.jpeg" width="100%" media_type="3" />Camping with all the breathing equipment, 2018. <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606200883124191_r.jpeg" alt="51477060_1606200883124191_r.jpeg" width="100%" media_type="3" />Another clinic appointment to check his breathing and chest. <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606200915911344_r.jpeg" alt="51477060_1606200915911344_r.jpeg" width="100%" media_type="3" />Sensory aversion! Learning to touch different textures on his 5th birthday, 2020. <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606200954889963_r.jpeg" alt="51477060_1606200954889963_r.jpeg" width="100%" media_type="3" />Traveling with mum to the Sonoran Desert, 2017. <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606200977426410_r.jpeg" alt="51477060_1606200977426410_r.jpeg" width="100%" media_type="3" />Turning five. Happy Birthday! <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606201057243663_r.jpeg" alt="51477060_1606201057243663_r.jpeg" width="100%" media_type="3" />Adapting to riding the mall rides with the help of some gaffers tape.  <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606201091775558_r.jpeg" alt="51477060_1606201091775558_r.jpeg" width="100%" media_type="3" />Snuggles and giggles with mum at the park. He is wearing his conductive hearing aid (red band on his head), 2020. <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606201127138836_r.jpeg" alt="51477060_1606201127138836_r.jpeg" width="100%" media_type="3" />Road trips, on our way to camping, 2020. <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606201152284584_r.jpeg" alt="51477060_1606201152284584_r.jpeg" width="100%" media_type="3" />Weekend bike rides, 2020. <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606201186100702_r.jpeg" alt="51477060_1606201186100702_r.jpeg" width="100%" media_type="3" />More hospital stays, 2020. <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606201232240737_r.jpeg" alt="51477060_1606201232240737_r.jpeg" width="100%" media_type="3" />Vision impairment means we enjoy big bold books that are tactile, different surfaces have textures that he can feel his way around with, 2020. <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606201278803720_r.jpeg" alt="51477060_1606201278803720_r.jpeg" width="100%" media_type="3" />Sunshine and nature in Cradle Mountain, Tasmania, 2019. <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606201312485210_r.jpeg" alt="51477060_1606201312485210_r.jpeg" width="100%" media_type="3" />Small, but mighty.  A post nap smile.  He still had the NG tube going through his nose and directly down into his stomach, 2015. <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_160620134495709_r.jpeg" alt="51477060_160620134495709_r.jpeg" width="100%" media_type="3" />Sitting up at home to watch favourite movie, 2020. <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606201370559496_r.jpeg" alt="51477060_1606201370559496_r.jpeg" width="100%" media_type="3" />At the park on the slide, 2020. <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606201464698524_r.jpeg" alt="51477060_1606201464698524_r.jpeg" width="100%" media_type="3" />Looking at the visuals at the museum, 2020. <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606201497308783_r.jpeg" alt="51477060_1606201497308783_r.jpeg" width="100%" media_type="3" />CME Therapy, 2019. <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606201546754110_r.jpeg" alt="51477060_1606201546754110_r.jpeg" width="100%" media_type="3" />Relaxing after a bike ride, 2020. <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_160620160682964_r.jpeg" alt="51477060_160620160682964_r.jpeg" width="100%" media_type="3" />Dressing up as superheroes to help fundraise for the Children's Hospice, 2020. <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606201630117018_r.jpeg" alt="51477060_1606201630117018_r.jpeg" width="100%" media_type="3" />Numbing cream on and waiting for another blood draw, 2021. <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606201647499283_r.jpeg" alt="51477060_1606201647499283_r.jpeg" width="100%" media_type="3" />Last photo before he got rolled into surgery, 2019. <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606201745473298_r.jpeg" alt="51477060_1606201745473298_r.jpeg" width="100%" media_type="3" />Cruising around the block on his bike, 2020. <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_1606201796426996_r.jpeg" alt="51477060_1606201796426996_r.jpeg" width="100%" media_type="3" />Projectile vomiting in public places, 2019. <img src="https://d2g8igdw686xgo.cloudfront.net/51477060_161257851446670_r.jpeg" alt="51477060_161257851446670_r.jpeg" width="100%" media_type="3" />While visiting the zoo during Dreamnight, he saw a turtle for the first time. He was so happy be burst out in a big smile, 2017.

Anonymous

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Expecting The Unexpected film

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Expecting The Unexpected film

Still $21,274 to go. Help us build momentum.