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Growing with Gabriel

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Before we tell our story, we'd like to tell you what Spinal Muscular Atrophy is and what we hope to achieve with this page.

So what is Spinal Muscular Atrophy?
Gabriel was diagnosed with a rare genetic disorder known as Spinal Muscular Atrophy (SMA) Type 2. It is the number one genetic killer of children under aged 2. SMA is a rare disorder occurring in approximately 8 out of every 100,000 live births, and affecting approximately 1 out of every 6,000 to 10,000 individuals worldwide. However despite the numbers a large number of these people are only carriers and only a small few are unfortunate enough to be born having SMA. SMA affects muscles throughout the body. In the most common types, weakness in the legs is generally greater than in the arms. Sometimes feeding, swallowing, and respiratory function (e.g., breathing, coughing, and clearing secretions) can be affected.

Since he was diagnosed he has become wheelchair bound, has been placed on breathing treatments, had to have a feeding tube put in and spent nearly  1/3 of his life in the hospitals. SMA is no friend and is very unforgiving. While we currently do not have a cure we do have Spinraza a gene therapy that shows promise for more time with Gabriel. And there are other drugs in the system that could even give us more time with him. But for now SMA remains the same killer it was before.

And now you may wonder what the goal is? Well in short it is to cover Gabriel's rising medical cost and care.  Which in this world far exceeds the incomes of many

Finally we wish to thank any and everyone who stops by here, who donates here and who comes to follow Gabriel on his Facebook page.

My Facebook Page - "GrowingWithGabriel"

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Donations 

  • roger gerwe
    • $100 
    • 6 yrs
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Organizer

Uriah Hodgson
Organizer
Knoxville, TN

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