SMARD is such a rare disease that only 100 children in the entire world have been diagnosed with it. SMARD stands for spinal muscular atrophy with respiratory distress.
SMARD is comparable to ALS for children, with very little being known about the disease and no known cure. Children born with SMARD have paralysis of their muscles and diaphragm muscles and are unable to breathe on their own.
A young eight-month old Brooks was born with SMARD, and earlier in July, he finally made it home from the hospital for the first time with his proud parents.
Brooks Howell has spent over 200 days at Norton Children’s Hospital. The care team has been working hard over the baby’s first eight months of life to provide him with a special machine. Called the VOCSN, it will allow Brooks to breathe and can do the work of several different machines in one.
Brooks did encounter some setbacks in his first few months of life as he adjusted to new machines but he is now home and his parents are overjoyed that their commitment to getting him out of the hospital has come true.
Typically, the life of a child who has SMARD will start to rapidly deteriorate in the first two years.
However, Brook’s parents are not defeated and have shifted their focus on a non-profit called “Smash SMARD Challenge.” This nonprofit has funded over half a million dollars to fund for gene therapy, research, and education which can help children born with SMARD. Read more about it here.
Brooks parents are determined to raise one million more dollars in hopes that children like Brooks in the future will have a different outlook and improved quality of life.
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