I had every
intention of this post being about 2 amazing parents here in the Houston area
that have made it their mission to raise awareness about their daughter’s fatal
disease. Over the weekend I found their blog via Yahoo, as many of you may
have. Back in November the Canahuati’s were blessed with a baby girl. About a
month ago they received unbelievable news about their first child’s health,
news that would be debilitating to most people. Their precious bundle of joy,
Avery, was diagnosed with spinal muscular atrophy (SMA), type 1. SMA is an incurable
disease that attacks the spinal cord leaving its host without any body
functions except speech and cognitive processing over the progression. Most
babies do not make it past toddler age with this severe disease, only living
about 18 months after diagnosis. After reading several articles and many posts
on the blog, I was blown away by the strength, courage, and positive nature
that these 2 individuals took with a situation that could have left them crippled
emotionally to simply stand back and watch their daughter breakdown before
their eyes. Instead, they decided to make it their priority to build the best
possible life for their daughter while she graced this earth with her smile and
raise awareness for SMA simultaneously. They setup a string of “bucket list”
items for their precious daughter to accomplish each day. I have made sure to check
the blog each morning and afternoon after initially finding the page to see
what Avery had been crossing off her list. To my dismay when pulling it up this
morning, I read that Avery passed away yesterday from pulmonary distress that
led to cardiac arrest. I had to double glance at the dates that headlined the
post notifying the world that the 18 months that these parents clung to had
ended in a flash. As with any situation like this, you cannot help but feel an
immense amount of sorrow for this couple. If you have not read Avery’s blog
yet, I encourage you to do so. It will only take a minute to educate yourself
on SMA with what Avery still has to offer the world about the disease, what
research is being done, and what you can do to help. www.averycan.blogspot.com
As a parent,
this really puts into perspective how each second of every day is a blessing
with our children. There are definitely stresses to being a parent of a
toddler, the constant teaching and protection. But at every angle the stress is
completely worth the smiles, laughs, cute antics, milestones and them telling
you “love you”. As a NICU parent, it is hard not to have some retrospective
that Isabella could have not made it through her bowel surgeries and that our
first child wouldn’t be on this earth to impart so much joy in our lives. In
this point of view BLESSINGS is an understatement in our household. Both Zach
and Bella are amazing children that bring an unbelievable amount of light into
our lives. I love watching Zach run, it is one of the cutest things I have ever seen. Watching Bella dance and sing is music to my heart. God works in ways that sometimes seem harsh at first, but constant
faith in His plan brings us through those harsh moments, stronger on the other
side even. Please help our family in praying for the Canahuati’s for their loss,
that they have continued faith in building awareness for SMA, as well as all
other families and babies out there going through similar situations. As our
family knows first-hand, the power of prayer is an awesome thing!!! Love, peace, and the power of the Lord be with all of you!!!
Here are Zach and Bella being their SUPER cute selves:
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