Nusinersen/Spinraza > Perspective of a father with a son with spinal muscular atrophy type 1

A father tells his story of how his younger son was born healty, few months later reached  whole family the fatal diagnosis spinal muscular atrophy type I

This is a special story, because the father is a well-known physician MD, PhD, Department of Emergency Medicine, McGovern Medical School at the University of Texas Health Science Center at Houston.

When the role father / physician run into each other. His son enrolled in the ENDEAR trial. The last hope for children with severe SMA1.

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To the end:
I understand the father so well, I am a child-intensive nurse. With me, the boundaries between mother and intensive nurse are just as blurred. This is even harder to be like a normal mom who knows nothing about the background processes. My son was born with SMA1-2 and was damn weak after birth. After the birth he could not scream, he had non strength. I knew, something is not okay. The screening brought the truth to light.

Five years later we too have found our balance. Currently our son is stable. He lives his everyday life on his special path. He goes to school, he has an mobility assistance dog. We have a 24 hour assistance, I can work in my profession. My husband Nils, who works as an independent architect, is there for him when he’s home.

We live our lives with our twins where one is healthy and the other is sick. I do not want to moan like the many other parents where kids have SMA. For us it was a challenge of the life we have mastered well as I think so.

We live our lives with our twins, where one is healthy and the other is sick. I do not want to moan about how life is unfair, like the many other parents where kids have SMA do it. We are so thankful to have received this valuable gift. Our son is struggling every day, so we have the right not to complain, he would have to complain, but he does not.
For us, it was a life-long challenge that I think we have mastered well and still do it.