Tri Nguyen - Son Has Pelizaeus-Merzbacher Disease (PMD)
From: Abigail Mahnke, host of Inner Views
Length: 25:05
Tri's son Nathan has a rare genetic disorder called Pelizaeus-Merzbacher Disease (PMD). Nathan is just 7 months old and has a prognosis of 1–3 years. His brain is not developed and he can't hold up his head, walk, talk, or feed himself. Tri also doesn't believe he can see or hear. The gene is carried on his wife Teresita's side and PMD has wreaked havoc on many members of her family.
Teresita's 3 brothers all died around the age of 1 but, growing up in rural Paraguay, no one knew why until Nathan was diagnosed. The gene for PMD is carried by women and passed on to males. Three months after Nathan was born, Teresita's sister gave birth to a boy who also has PMD. Tri and Teresita have a 3-year-old daughter but won't know until she turns 18 (and can consent to the test) whether or not she is a carrier.
In the meantime, Tri and Teresita want to do everything they can for Nathan, but realize time is running short. A study at UCSF is being conducted using stem cells. Tri hopes to get Nathan in the study - he has applied and is now waiting.
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Related Pieces
Piece Description
Tri's son Nathan has a rare genetic disorder called Pelizaeus-Merzbacher Disease (PMD). Nathan is just 7 months old and has a prognosis of 1–3 years. His brain is not developed and he can't hold up his head, walk, talk, or feed himself. Tri also doesn't believe he can see or hear. The gene is carried on his wife Teresita's side and PMD has wreaked havoc on many members of her family.
Teresita's 3 brothers all died around the age of 1 but, growing up in rural Paraguay, no one knew why until Nathan was diagnosed. The gene for PMD is carried by women and passed on to males. Three months after Nathan was born, Teresita's sister gave birth to a boy who also has PMD. Tri and Teresita have a 3-year-old daughter but won't know until she turns 18 (and can consent to the test) whether or not she is a carrier.
In the meantime, Tri and Teresita want to do everything they can for Nathan, but realize time is running short. A study at UCSF is being conducted using stem cells. Tri hopes to get Nathan in the study - he has applied and is now waiting.
Additional Credits
On-air credit to KOOP as follows:
Recorded at KOOP Radio 91.7 FM Austin, Texas
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