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Inspiration

SLR Lounge Writer Tanya Smith Needs Your Help For Her Son With Rare Disease

By Hanssie on June 24th 2015

[FOUNDER (Pye) & MANAGING EDITOR’s (Hanssie) NOTE – Hanssie and I know that Tanya is too kind and humble of a person to ever write anything and request help, so we wanted to write this article on her behalf. For all of those that have been touched by Tanya in some way or another, we are asking the SLR Lounge community to come together in her time of need.]

If you’ve been a reader of SLR Lounge for any length of time, you’ll have most likely read an article or two from our resident mom/former graphic designer, Tanya Smith. You can read more about Tanya in her Meet the Writers interview here.

In addition to juggling her responsibilities as a mom, running a photography business and a side business as a consultant for a bag company, Tanya finds time to write for us here on SLR Lounge. You can find her popular Time Out With Tanya series here. This summer, Tanya decided to finally work on a project that she’d been wanting to do, and that is working on making videos. The following video is one of the ones she’s been working on, and it’s close to her heart.

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Tanya’s son, Calvin, is a sweet little 7-year-old future inventor with an extremely rare form of dwarfism called Metatropic Dysplasia.

There are less than 100 documented cases of Metatropc Dysplasia in the world. MD affects the long bones, spine and joints, causing dwarfed stature, extreme curvature of the spine, compression of vital organs, joint pain and in some cases paralysis or even death. Metatropic means “changing shape” as this is a condition that progressively worsens over time.

Lately, the pain has worsened, and Calvin has been showing signs of spinal compression. Since this is such a rare disease, the doctors in the Pacific Northwest have never treated, much less seen a case of MD. As a parent, you want your child in the best possible hands with the most knowledgeable doctors especially when your child is in pain.There is only one known specialist for Metatropic Dysplasia, and he’s across the country in Delaware. Though health insurance will cover most of the tests and copays, Tanya is looking at travel and lodging fees for up to  4 visits a year until Calvin turns 18. Tanya has set up a YouCaring fund asking for donations to offset some of this cost.

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Get to know Calvin and his family a bit better in the following video. I love the part at 2:16 when Calvin explains his invention. What a creative little mind he has.

How You Can Help

If you can, please consider helping in the following ways:

Thank you in advance for your support!

About

Hanssie is a Southern California-based writer and sometimes portrait and wedding photographer. In her free time, she homeschools, works out, rescues dogs and works in marketing for SLR Lounge. She also blogs about her adventures and about fitness when she’s not sick of writing so much. Check out her work and her blog at www.hanssie.com. Follow her on Instagram

Q&A Discussions

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  1. Tanya Goodall Smith

    Hey guys, I just wanted to post an update on this. I am taking Calvin next week to see Dr. Mckenzie in Delaware! We are so excited and feel so blessed that we’re able to do this because of all the support we got from our family, friends and total strangers. Thank you, thank you, thank you to all who donated and left encouraging comments. We appreciate it so much!

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  2. Graham Curran

    I am so grateful to live in a country with a socialised medicine system. My wife had a rare form of multiple myeloma which caused a Timor in her upper arm. She had chemo-therapy, radio-therapy and a titanium prosthesis for the arm. She then had a stem cell transplant which involved a month’s stay in a hospital isolation unit. None of this treatment incurred any cost from us above what we pay in our taxes and she his still going strong 12 years later. I shall contribute to Tanya’s fund as a thank you for her contributions here.

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  3. Rui Pinto

    Like Timothy said, it’s almost a obligation for us to return the favor! Best of luck to you and Calvin!!

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  4. Timothy Going

    So sorry to hear about this, but it makes me even more impressed with Tanya’s articles! Donating now!

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