The Road to Diagnosis
![A traumatic beginning at 26 weeks. Mom: “As long as you're willing to fight, I'm here to fight with you.”](https://i.ytimg.com/vi/kbDO1bhKEkY/sddefault.jpg)
A traumatic beginning at 26 weeks. Mom: “As long as you're willing to fight, I'm here to fight with you.”
The mother of a medically complex 14-year-old talks about the first few months with her son and the complications that arose during that time as well as the moment she and her son decided to fight.
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A traumatic beginning at 26 weeks. Mom: “As long as you're willing to fight, I'm here to fight with you.”
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A diagnosis of Krabbe; and the medical team getting to meet him before his condition progressed.
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A prenatal diagnosis of Congenital Diaphragmatic Hernia and living into an uncertain prognosis
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Sydney has totally changed the way I look at life: there’s gratitude, and also the flip side.
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Getting the Diagnosis: How do we deal with this? Can this even happen?
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Learning our son had a rare genetic disease: It was a whirlwind.
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The diagnosis didn’t change anything. We were still just treating symptoms.
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Microcephaly Capillary Malformation Syndrome: 13th diagnosis in the world
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Mom’s instinct is right: A diagnosis of Polymicrogyria
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The Diagnostic Odyssey: It never occurred to me that it would be fatal.
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We felt we better step up and show her that she picked the right parents.
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A mom: “No matter how blindsided you feel, you will get through it. You are strong enough.”
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The road to diagnosis … Do we wish we had known earlier? (CLN2/Batten)
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Docs didn’t look at the Whole Child: It took a year to get the Hurler diagnosis.
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Apnea, aspiration: Suddenly learning my baby is having trouble breathing, and we don’t know why
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Sanfilippo: The road to diagnosis
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So I started questioning …. And it was devastating.
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