Friday, November 21, 2014

Bella's Secret Garden

Earlier this year, I brought you the story of an incredible little girl named Bella. Bella came into this world with a poor prognosis, and was diagnosed with a rare syndrome called Frontonasal Dysplasia. Bella has undergone some major surgeries since I last wrote about her. 
Her mother, Lisa shares an update.

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At the age of 20 months, Bella has already undergone three major craniofacial reconstructive procedures. Her head circumference has been brought from the 0 percentile to the 75th percentile. Her skull has changed shape significantly, and her midface, nasal bridge and orbits have been surgically moved forward.

Bella has Craniofrontonasal Dysplasia, a rare syndrome that we are still learning about today. Bella's future skull growth is likely to regress and will need frequent "tweaking" until adulthood. She has surgically-created soft spots that may need closing, depending on how her body adapts and heals, and she will undergo a scar revision surgery to minimize scarring from the cranial vault distraction prior to starting kindergarten.



Bella's craniofacial surgeries are now at a lull, which we plan to enjoy thoroughly. In the meantime, Bella is being followed by the Janeway Rehab team in St. John's, and will commence with the Cerebral Palsy team in January. Due to Bella's initial traumas (a flat-line EEG, seizures etc), Bella has some issues to struggle through, all of which we consider to be fairly minor in contrast to our initial medical expectations. Her prognosis of surviving the removal of life support systems was once unlikely. A future with the ability to walk/talk/flourish was once the furthest thing from a possibility.

We retained hope for Bella, no matter what obstacles we faced. Looking into her eyes gave us hope, as the eyes staring back at us seemed to speak volumes. We chose to make her life as comfortable and enjoyable as humanly possible, no matter the challenges. We once said "If there's even the slightest chance that she can feel happiness, we have to try". And we did, and we were blessed in return with countless vibrant grins and a giggle that would melt the coldest heart.



We realize the bullets we've dodged, and we appreciate them numerous times every day. We cherish and marvel at every surpassed milestone. We celebrate her every day. We have been blessed endlessly.

I truly believe that the positivity that has surrounded us since her birth has helped on countless levels. The support we've received has been both humbling and breathtaking.

Should Bella require assistance due to Cerebral Palsy, we still consider ourselves lucky, as it's obvious any detriment won't inhibit her, she just might need to do some things a little bit differently. The point is, she'll still get it done. She'll see, feel, hear, and know life and love. And if you ask me, that's really all that matters.

*****

A couple of months ago, a team of supporters and family members sponsored a photo shoot for Bella and her family and created a fundraising calendar to help with the astronomical costs of her surgeries and frequent trips to Toronto's Sick Kids hospital. Although Bella is thriving and is a happy toddler, she will still require multiple craniofacial reconstruction surgeries in the years to come. 



Bella's Secret Garden calendar is available now, and has been selling fast! 
Please join Bella's Secret Garden Community on Facebook to find a list of locations where calendars are available.


NTV just recently did a story on Bella. You can watch the clip here -
http://ntv.ca/bellas-calendar-raises-money-for-future-surgeries/

And she was featured on Global News here -
http://globalnews.ca/news/1383020/sick-kids-doctors-treat-baby-with-rare-skull-condition/

Bella, you are a true inspiration. Lisa writes in the calendar, "Bella has consistently defied all odds. I pray that even one mother can retain hope after seeing Bella's journey."

Lisa, I am one mother you have touched, but I am only one of countless others. You have shown me that despite adversity, every day is an opportunity to celebrate life. You confirmed for me what I learned years ago - that no matter what our children look like or what they are able to do, they deserve to be valued and celebrated.

I hope you always know how valuable your abilities, your love, and your mere existence is.
You are a gift, sweet Bella. I am honoured to be on the receiving end.

-Julie

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