Meet Orson

Orson was diagnosed with Spinal Muscular Atrophy

Meet Orson, he is our 2nd born son. He is the happiest boy who loves to giggle and watch his brother play. He has the longest eye lashes you have ever seen, makes all the girls jealous. He has a beautiful soul and makes your heart melt with just a look. He currently enjoys reading stories, watching Baby Einstein and playing with his brothers toys.

On January 29, 2018 Orson was diagnosed with Type 2 Spinal Muscular Atrophy (SMA), our hearts were broken.

Here are some of the facts:

• SMA destroys the nerves that control voluntary movement like crawling, walking, head and neck control and even swallowing.

• SMA is the #1 genetic killer of children under the age 2.

• 1 in 6000 babies are born with SMA.

• 50% of the children diagnosed before the age 2, will die before their 2nd birthday.

For more information visit: www.curesma.ca

Orson is a fighter and everyday he combats this degenerative disease with everything he has. In less than 1 year he has lost the ability to hold his own head up, sit, walk, and he has trouble coughing and taking deep breaths. He has had pneumonia twice this year and we aren't even in the winter months yet.

Though genetically Orson has been diagnosed as Type 2 due to the fact that he has 3 copies of the SMN 2 gene, he clinically presents as a Type 1.

We are not giving up, we are fighting this disease everyday and will continue to fight so that Orson can live his best life possible.

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