Heather Smith, who is the President and Co-Founder of SCID Angels for Life Foundation, is one tough cookie.
Smith has dedicated her life to helping other parents as a result of her devastation and grief after her son Brandon, passed away from a rare primary immune deficiency disease called severe combined immunodeficiency (SCID).
The above video is not the Smith’s story, it is part of a campaign the Immune Deficiency Foundation created to promote SCID newborn screening.
When Brandon was born, he seemed perfectly healthy. About six months later, he came down with an ordinary cold, but because he didn’t have a strong immune system, his little body couldn’t fight it off. Heather and her husband took him to their pediatrician, who told them that Brandon seemed just fine because sick babies don’t smile and Brandon was beaming.
But Brandon’s condition grew worse after Heather and her husband took him back home. At that point, Momma Heather took matters into her own hands and insisted the pediatrician admit Brandon to the hospital for tests. She got her wish. By then, Brandon wasn’t smiling, his lips were ashen, his fingernails were blue. Of course this is every parent’s worst nightmare—feeling helpless when your baby appears to be dying—and then it happens: the child dies.
While in the hospital, Brandon was diagnosed with SCID after a series of tests, which is how Heather learned she is a carrier. They were told there was no treatment, there was nothing that the doctors could do.
I can only imagine their grief, not having children myself, but what absolutely amazes me is Heather’s strength and determination not to give up! A year later, after processing their grief, the couple got pregnant again.
This story has a much happier ending which you can read about here; ohhhh I love the video! Today, Heather is actively involved in the SCID community–hell, she’s helped to build it! She’s out there, speaking to raise awareness and to get laws passed in every state to make it mandatory for newborns to get screened.
Heather, you are my hero! I mean that! Rock on and thank you so much for inspiring so many parents in the SCID community.
