Baby Blue Eyes – Amazing Owen

Today I met an incredible little boy who has touched my heart and with one smile, left a mark in my life.  His name is Owen and he’s recently been diagnosed with Spinal Muscular Atrophy Type #1.  If you’re like me, you have no idea what this is and so I will fill you in:

1 in 40 people carry the gene that causes SMA – Spinal Muscular Atrophy. Here are a few quick facts. SMA is the leading genetic killer of children under the age of two. SMA is a degenerative disease that affects the voluntary muscles. Those that survive face a life watching as their muscles slowly fail leaving them unable to walk, crawl, sit-up or even swallow. It is a recessive disease – two parents who are both carriers of the gene that causes SMA have a one in four chance of passing the disease on to a child. SMA crosses all racial, ethnic, religious and gender boundaries and while it is primarily diagnosed in children it can affect people of any age..

Owen has SMA type #1.

From his mother:  “Owen was diagnosed at 8 months, with SMA. We noticed something was wrong at about 3 weeks old when he wouldn’t bear weight on his legs. We thought he was just lazy at first but by the time he was 4 months we knew something serious was wrong. By the time we had finally met with all the different doctors and done the tests he was diagnosed with SMA. Owen is now 12 months old and is still doing great he is an incredibly happy baby who always has a smile for everyone. He loves his older sister and brother and just lights up when they are around…he is 12 months old. He has never crawled, cannot bear any weight on his legs, his grasp is weak, and he will never walk or stand. We consider ourselves blessed because he is learning to sit and can roll from front to back. His breathing is still good as well as his swallowing.”

If you would like to read more about SMA, you can do so at the following links: www.sophiascure.org and  www.fsma.org.

If you would like to DONATE directly to Owen, you may do so by sending funds to a private Paypal account for his family.  To do so, please simply email me using the contact page above to obtain the Paypal email address or visit the Facebook page at www.facebook.com/elizabethfultonphotography for more information.

The costs are growing for Owen and his family with so many hospital visits, doctor’s appointments and a special diet so any and every dollar sent their way will be put to good use for his care.

Owen may look very much like he’s the same as every other child in these photos, but his journey is going to be much different.  Your help via a donation would be greatly appreciated by this family.

And now, the amazing little boy in photos. I think I cried the entire time while working on these images. He’s just so precious!

 

Spinal muscular atrophy.

Ottawa baby photographer.