Our daughter Sophia was dx at 6 weeks of age with SMA Type 1. We chose the palliative / comfort care path for her, were able to keep her comfortable at home with medications (only used NG tube and suction machine, no bi-pap or other respiratory support), and she passed away peacefully at 9 months of age at home in my wife's arms.
In addition to palliative / comfort care, we have experience and helped other families with family planning options (CVS & amino, IVF w/PGD, and adoption), carrier screening advocacy & pre-natal genetics, and grieving support.
Feel free to contact us anytime with any questions.
- Michael TerHorst
[email protected]
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