Story
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My best friend's daughter was diagnosed with Tango 2 at the age of 6, it took 4 years to get a diagnosis as it is so rare! She is super cute and a joy to be around. Her mum explains more below.....
Since the age of 2 Phoebe has had unexplained walking issues and then we also noticed speech and learning difficulties as she got older. Tango2 is so super rare that it takes years for diagnosis and genetic screening. There are only around 200 children who have it in the entire world! Phoebe is missing a key bit of protein that helps her use energy and puts her at risk of further life threatening health issues. At the moment there is no cure. We want increased awareness of Tango2 to enable funding of research and help to diagnose more kids early and prevent some of the deteriorations. 50% of children who have Tango2 die before the age of 9 years old due to a metabolic crisis. Early diagnosis is key to protecting Tango2 children. Please help support us.
This is such a rare disease most doctors don't even know about it, so let's raise some money to help the research.
This is also a long held desire of mine - to do a Wolf run. Unfortunately due to knee injury and ongoing Achilles tendonitis it has not been possible. But this is the year it's finally going to happen!! I may be broken by the end of it but I'm going to have fun along the way :)
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