cysticfibrosismom

I'm just a regular mom, figuring out life with my daughter Sophia, who has cystic fibrosis.Take this journey with me.

About

My name is Katie Schulz. My dream is to help find a cure for cystic fibrosis. My daughter Sophia has this fatal genetic disease, which affects mainly the lungs and digestive system. I’m starting this blog to share my insights and experiences with cystic fibrosis and to increase awareness.

 

A bit about me first… I grew up in Toronto, did my BSc in Psychology at U of Toronto, and then my MScPT (Physiotherapy) at McMaster University. I’ve worked in the hospital setting with pediatrics, adults, and in the burn unit. After having Sophia I decided to stay home to care for her and be her personal physiotherapist. I’ve worked part-time outside the home, but spend most of my time with my kids.

Never heard of cystic fibrosis? Here’s a quick rundown. Cystic fibrosis is the most common fatal genetic (inherited) disease affecting young Canadians. Thick mucous causes problems with the lungs and digestion, but can affect almost any organ in the body. There is no cure. Currently, only half of those with cystic fibrosis are expected to live into their 40s and beyond. On a typical day, my daughter spends 2 hours completing chest therapy to help keep her lungs clear. She takes 15-20 pills with meals, just to digest her food. She also takes supplemental vitamins and minerals as her body has a tough time storing them. To say the least, life isn’t easy for someone with cystic fibrosis.

More information can be found on Cystic Fibrosis Canada’s website:  http://www.cysticfibrosis.ca.

3 thoughts on “About

  1. Hi Katie, that’s great! Thanks a lot! I will email you a copy of the gala brochure once it’s finished. The event itself takes place on May 8 in London. Your daughter is very pretty by the way!

    All the best, Caroline

  2. Hi Katie,

    I came across your beautiful poem by chance because someone re-posted it on Facebook a few days ago. By complete co-incidence I also have a daughter with CF called Sophia who is 3.5 years old! How old is your Sophia? How is she doing?

    Now, here is a question for you: I am a trustee of the UK’s Cystic Fibrosis Trust, the only UK-wide charity for people affected by CF. I am helping the Trust organise its 50th anniversary event in May. I have shared your poem with some of my co-organisers who also have/had children with CF and we were all deeply moved by it.

    It would be wonderful if we could reprint your poem in the evening’s brochure…obviously we would credit it to you! Would you agree to that? It made me cry when I read it and I think it will have the same impact on my other people.

    Please let me know what you think.

    Best regards to you and Sophia

    Caroline (& Sophia)

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