Family mourns 'brave' baby girl after battle with rare genetic disease

<p>A family is mourning the loss of their infant daughter after what they described as an "incredibly brave battle" with an exceptionally rare genetic disease. </p> <p>Autumn, 10 months, died at Wellington Hospital after living with MIRAGE syndrome, an incredibly rare genetic condition which affects approximately one in 1 million babies. </p> <p>Autumn's family said her mother, father and six-year-old brother had spent "countless days and nights" in Wellington Hospital during the 10 months since she was born, "doing everything we could to give Autumn every chance possible". </p> <p>"Unfortunately, her body had been through so much she couldn’t fight anymore. She passed peacefully in our arms surrounded by her family.</p> <p>"Despite everything she endured, she filled our lives with so much love, strength, and joy. Her smile, her courage, and the love she gave us in her short life will stay with us forever," the family said. </p> <p>"Now we are facing the unimaginable heartbreak of planning our baby girl’s memorial while trying to navigate a future without her." </p> <p>MIRAGE syndrome is caused by a mutation in the SAMD9 gene and can affect several parts of the body. </p> <p>The name refers to its main features — Myelodysplasia (bone marrow problems), Infections, Restriction of growth, Adrenal hypoplasia (underdeveloped adrenal glands), Genital abnormalities, and Enteropathy (gut complications).</p> <p>The family said they had been encouraged by friends to create a <a href="https://givealittle.co.nz/cause/autumn?fbclid=IwY2xjawTHm69leHRuA2FlbQIxMQBzcnRjBmFwcF9pZBAyMjIwMzkxNzg4MjAwODkyAAEed6Gl2Drg-WazbHHoMg7wG5si8KKP--USrTUNXIyqQJORGRrWR7xAPgXfLPs_aem_yjCv4cLGiLJrvA5E0s_-cg" target="_blank">Givealittle page</a> to help cover memorial costs and ongoing expenses as they began to process the "devastating loss" of their daughter. </p> <p>"Thank you for your kindness, generosity, and for helping us celebrate the beautiful life of our precious Autumn.</p> <p>"She will always be deeply loved, forever missed, and never forgotten." </p>