Monday 29 December 2014

SCID Awareness !


No one you know in your family has ever had an immune deficiency. You give birth to your baby girl, she's soon 3 months old. She gets an ear infection. She goes into cardiac arrest. She dies.

This happened to a mom, a family here I know at RMH. How crucial is it to you now, to be aware that SCID screening is not happening in every province in our country? Only Ontario at the moment. 

Now think about Bella. We just found out in Novemeber 2014 she was born with an immune deficiency. She survived an entire year without anyone realizing. 
I constantly lose my breath and then try to catch it again, when so many scenarios run through my mind that have happened in the last year. What a protection from God she has over her, what a miracle she truly is. And now, we have the knowledge to help her, the BMT to cure her. 

Lyle's cousin Nicole wrote this note to me and it means a lot, thank you Nicole. 

"Your baby girl is a living breathing miracle for sure! I just finished reading up on SCID and it angers me that this isn't a Canadian wide screening process for all babies. (http://immunodeficiency.ca/wp-content/uploads/2013/08/SCID.pdfAltho)ugh Bella had other obstacles with the Hershprung's Syndrome it put her in a compromising position getting vaccinations while having SCID. I'm so happy you are finally getting answers and we are praying for a match and a speedy recovery for Bella as soon as possible. She is a fighter for sure. Love the Blog and I hope things keep positive and you are feeling lots of love and support. Take care ♥

~Thank you Nicole

I have had a long discussion with Bella's immunologist Dr. Wright. She is advocating for Alberta as we speak to have a SCID screening process in place. I'm sure you all know where I stand on Saskatchewan's children's medical needs. Argh. I wonder, by the time I become an immunologist, Sask. Children's Hospital will be built...career change? It would be worth it, but for now we at least need this screening in place. It could have saved babies lives already, it could have saved Bella from so much pain in  hospital this past year... We could have been home by now.


1 comment:

  1. You are more than welcome Kyla. As a Mom I can only imagine how hard it has been to know you could have lost her and have to remain in isolation. Thank goodness they are on high alert with her now. She has come so far in her first year...and truly is a miracle ♡ There was a petition through the SCID Awareness site but now it's closed. If I come across another one I'll share it.

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