Tay Sachs Disease

Mackenzie

After nearly a year of testing, Mackenzie was diagnosed with Tay- Sachs, a terminal genetic disorder that progressively destroys nerve cells in the brain and spinal cord. Before her birth, her father had been genetically tested, but not for all the possible strains of Tay-Sachs—a mistake attributed to either carelessness by doctors and geneticists or the simple fact that health insurance didn’t cover the tests. 

We try and take everything one day at a time. One day is going to be hard. The next day could be good. We enjoy the good days, remember them, and just don’t take anything for granted. 

– Brian, Mackenzie’s dad 

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Jonathan, Mowat-Wilson Syndrome

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Brian, Ataxia -Telengiectasia