In Memory of Baby James
Donation protected
Some reading this may know Baby James. Some may be hearing about his terminal illness for the first time. For some, this link came to you from an extended loving community. No matter what the source, this message has found its way to you for a reason.
James Francis Weinbrecht lived his short life diagnosed with Tay-Sachs, which is a rare and terminal neurodegenerative disorder. Tay-Sachs commonly takes the life of a child by age two or three.
James is the son of Greg and Andrea (Sweet) Weinbrecht, and he is the little brother of William. His first word was “Dada.” William became a proud big brother when James was born. James always smiled with his mom while watching Saints games on her lap.
However, born hidden in the smiles and cuddles of a seemingly healthy baby, this disease eventually destroys the nerve cells in the brain and spinal cord removing motor skills, sight and ability to swallow.
Click Here for More Information on Tay Sachs
On Friday, February 28th, 2020, James passed away at just under three years of age.
We reach out today, because throughout this heartbreaking journey there has been an outpouring of compassion from family, friends, and a community who want to help in any way possible. But how can we address inexplicable and extreme terminal illnesses in children like James? And how can we help with the devastating grief that comes to a parent & sibling when faced with saying goodbye to a child, a son, and a brother?
There is no easy answer to these difficult questions, but we do know a few things that may guide us in our intentions:
1. Greg, Andrea, and William would like to share James’ story to raise awareness about Tay-Sachs disease. Even though Tay-Sachs is not curable, there is a simple blood test that can be done during the first trimester of pregnancy. This blood test will detect if you are a carrier. If so, a prenatal test performed at 11 weeks will tell you if your baby is Tay-Sachs positive.
Click Here for More Info on Tay Sachs Testing
2. The Weinbrechts have devoted their lives these last few years to making certain James’ remaining days were comfortable and happy. Their everyday sacrifices assured that James knew every waking moment that he was loved.
A terminal disease reorders the structure of family life. Daily life can be far from normal and entail medical therapies, medications, time off work, and equipment. Therefore, in a small way, we hope to create a fund for any remaining costs that may not have been covered in support of a family that has shouldered their grief to live for James’ comfort and life these past two years.
3. And in a larger way, we know that the true horror of grief is how overwhelming and vast it is. So this fund is a gift to the memory of James so that his undeniable joy-filled spirt will live on and affect change in other lives. Because with James… when he could no longer speak, words were not needed to hear his spirit teach us about compassion. When he could no longer see, his light never failed to shine through the darkness.
Any remaining funds will be used for the benefit of the community at large—and in James’ name, this will include outreach for Tay Sachs-affected families and healing support services for siblings who suffer the loss of their terminally-ill sisters and brothers.
Given the immediacy of this event and the outpouring of love and support, additional details will be announced by the family at a later date.
James Francis Weinbrecht lived his short life diagnosed with Tay-Sachs, which is a rare and terminal neurodegenerative disorder. Tay-Sachs commonly takes the life of a child by age two or three.
James is the son of Greg and Andrea (Sweet) Weinbrecht, and he is the little brother of William. His first word was “Dada.” William became a proud big brother when James was born. James always smiled with his mom while watching Saints games on her lap.
However, born hidden in the smiles and cuddles of a seemingly healthy baby, this disease eventually destroys the nerve cells in the brain and spinal cord removing motor skills, sight and ability to swallow.
Click Here for More Information on Tay Sachs
On Friday, February 28th, 2020, James passed away at just under three years of age.
We reach out today, because throughout this heartbreaking journey there has been an outpouring of compassion from family, friends, and a community who want to help in any way possible. But how can we address inexplicable and extreme terminal illnesses in children like James? And how can we help with the devastating grief that comes to a parent & sibling when faced with saying goodbye to a child, a son, and a brother?
There is no easy answer to these difficult questions, but we do know a few things that may guide us in our intentions:
1. Greg, Andrea, and William would like to share James’ story to raise awareness about Tay-Sachs disease. Even though Tay-Sachs is not curable, there is a simple blood test that can be done during the first trimester of pregnancy. This blood test will detect if you are a carrier. If so, a prenatal test performed at 11 weeks will tell you if your baby is Tay-Sachs positive.
Click Here for More Info on Tay Sachs Testing
2. The Weinbrechts have devoted their lives these last few years to making certain James’ remaining days were comfortable and happy. Their everyday sacrifices assured that James knew every waking moment that he was loved.
A terminal disease reorders the structure of family life. Daily life can be far from normal and entail medical therapies, medications, time off work, and equipment. Therefore, in a small way, we hope to create a fund for any remaining costs that may not have been covered in support of a family that has shouldered their grief to live for James’ comfort and life these past two years.
3. And in a larger way, we know that the true horror of grief is how overwhelming and vast it is. So this fund is a gift to the memory of James so that his undeniable joy-filled spirt will live on and affect change in other lives. Because with James… when he could no longer speak, words were not needed to hear his spirit teach us about compassion. When he could no longer see, his light never failed to shine through the darkness.
Any remaining funds will be used for the benefit of the community at large—and in James’ name, this will include outreach for Tay Sachs-affected families and healing support services for siblings who suffer the loss of their terminally-ill sisters and brothers.
Given the immediacy of this event and the outpouring of love and support, additional details will be announced by the family at a later date.
Organiser and beneficiary
Michelle Margolis Hallam
Organiser
South Pasadena, CA
Andrea Weinbrecht
Beneficiary
