Alana's Story

Alana is known for her engaging smile, her sparkly eyes and her sociable personality befriending everyone she meets.  But Alana is not a typical 5-year-old, unable to walk, talk, eat, has lost her hearing and is fully dependent on others for her care.  In her first year Alana failed to meet developmental milestones, struggled with food and developed reoccurring chest infections.  Alana continue to grow slowly, had poor muscle tone and as she experienced tremors and vomited persistently, she lost the ability to crawl and say a few words as her symptoms worsened.  Invasive investigations and operations and eventually genetic testing provided a diagnosis just after her third birthday that Alana was born with a rare form of Mitochondrial Disease. 

 

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Alana’s family strive daily to find ways to improve her strength, mobility, communication and overall health to ensure she is as strong as possible to combat the disease as it progresses. Alana approaches therapy with immense determination despite her increasing medical issues and has shown great strength and resilience. She is now under the guidance of numerous medical specialists, takes more than 10 medications daily and receives her food intake through a tube to her stomach.  Alana has thrived over the past 2 years as her symptoms have been managed and her body is getting the nutrition she needs.

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This year Alana started school, a huge milestone, and she thoroughly enjoys it.  She adores her big sister and loves music, splashing in the pool, getting out on her custom trike and playing with the family dogs.  Alana is under regular medical review to monitor her condition, and the treatment is supportive at best.  There is no known cure for Mito.

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Alana’s family are actively involved to build awareness of the disease and generate funds to support better diagnosis, treatment and a cure for this devastating disease.