Here is another guest blog, this time from a Tiny Light! Thank you Miranda!
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I first read about the Tiny Light Foundation in our local paper. I like to read (or flip through) the paper so I know what’s going on in my community, but I don’t usually read the whole thing, only the stories that catch my eye. The one about the Tiny Light Foundation caught my eye and it was one of the stories that I really enjoyed reading. For a few days after reading it, I couldn’t stop thinking about it. I wanted to help out but I didn’t know how. I figured the least I could do is tell people about it. Then I remembered my mom works for a pediatrician; she probably sees kids all the time who would be wonderful candidates for this. So, after some searching, I found the paper in the recycling and read the story again, this time making note of the website and email address. I sent an email asking for a brochure or something that I can print for my mom to show the patients and explained that I’ve been through quite a bit medically so I know what it’s like for some of these families and I know how much something like this would mean to them. I got an email back from Melissa with a printable pamphlet and she told me she thought I would be a wonderful candidate for the Tiny Light Foundation as well. I had never actually thought of applying until she said that. After she mentioned it, I thought that would be so cool and applied.
I have had ten surgeries to lengthen and straighten my leg because I was born with a posteromedial bow in my tibia and fibula. This means that my lower left leg was bowed outwards and grows at a much slower rate than my other leg. After ten surgeries, we have lengthened my leg a total of almost 3 inches and it is pretty much straight. My legs are now the same length and I don’t have any pain. Other than the problem with my leg, I have a bunch of different things going on: familial hypercholesterolemia, I’ve had a kidney stone (VERY painful!!) because of a problem I had with my kidneys, I have scoliosis with pectus excavatum, and one of the valves in my heart, the mitral valve, is slightly stretched/floppy and causes the blood to flow backwards in my heart. Also, for a year and a half I was really sick. I had so many tests done and saw a bunch of different doctors but nobody could figure out what was going on. My problems just kept getting worse yet we couldn’t figure out exactly what was causing them. Thanks to a trip to the ER in the middle of the night, my mom doing some research, and finally a doctor who was determined to find out what was going on, we found out that my gall bladder isn’t functioning at all. Right now that is all we know. I’m taking a medication that’s helping, I just saw a new specialist, and I am waiting for an ERCP to see what’s going on and we will go from there. To add to it all, I have also recently started getting really bad migraines. We always wonder why I have all of these problems, so that is why I am waiting for an appointment with genetics to see if it is all related in some way.
Only a few days after I sent my story into the Tiny Light Foundation, we got a call from Jenn of Jenn Di Spirito Photography. It was very exciting! I had told my mom about the Tiny Light Foundation and that I was going to apply but forgot to tell her that I had applied so it was a nice surprise for her! I have a younger brother and sister and when I was only five years old, my brother only three, and my sister just two, our dad passed away from a heart attack. He was young, healthy, and active, so it was quite unexpected. My mom has been raising us by herself since then and she’s amazing. She is always there for me; whenever I’m in the hospital, she takes time of work and makes sure she’s there and she takes time off to take me to all the appointments and tests. So between taking time off, the different medications that I’ve had to take, and driving out to all the doctors all the time, it has cost a lot of money and keeps us quite busy. Our last family picture was probably at least five years ago, if not more, and I think we had it done at the superstore. So the pictures that the Tiny Light Foundation has provided us with mean so much to our whole family. If it weren’t for the amazing things that they do, we probably would not have such amazing pictures.
It took a while to set up our session because of our busy schedule and the not so great weather but when we did, we had a great time! We had to change locations because we were literally swarmed by mosquitoes trying to eat us alive (not kidding… I have not seen so many mosquitoes in my life). After we went somewhere else, we had lots of fun with Jenn and she got absolutely amazing pictures! Thank you so much to everyone at the Tiny Light Foundation!! And to all the Tiny Light families - thank you for sharing your stories, you are all so very inspiring!
Lots of love, Miranda Tymoschuk
P.S. If you would like to follow how I’m doing and what I’m up to (I do a lot of fundraising) you can check out my blog at www.ilaughlovedream.blogspot.com. In March I will be off to Kenya to help build a school. All my doctors have given me the okay to go, I’ve finished fundraising over $5000 for it, and I’m signed up! Now I just have to count down the days!!