Thank you!

Thank you, everyone, for making Moebius Syndrome Awareness day a big success, and for spreading awareness about Ozzie!!

As i watched my facebook and instagram feed turn purple, i realized how special and amazing it is that the collective communities are coming together for all the moebians.  I follow one girl on instagram, her name is Zayne, and she has Moebius syndrome – and seeing the pictures of her middle school dressed in purple, all her friends wearing shirts for her…. it almost made me cry to know that when Ozzie is ready for school that he can have a special day like that too.  How people around him will know that he’s really great, and that he just looks a little different.  It also made me think how fortunate we are to have things like The Many Faces of Moebius website and facebook page, that the Moebius Syndrome Foundation exists, that we can connect via the internet and conferences.

I’m also struck by how Ozzie’s experience in school will be different from, say, those with Moebius Syndrome who went through the school system 20 years ago.

I’ve collected photos from all those people who wore purple for us on Friday! you can see it here!

DSC_0017We love you!



It’s Coming!! Moebius Syndrome Awareness Day!! It’s January 24th (this friday) and we would LOVE it if you could show your support for our family by wearing purple on friday.

The T-shirts from the fundraiser have been arriving, slowly, and i REALLY hope that they all get here in time for Friday.

If you would like to post about MSAD on friday on facebook or twitter or instagram (@iamthediva) please use the hashtag #MSAD14 so we can share with the rest of the Moebius Community.



T-Shirts for EVERYONE!!

Our T-Shirt Fundraiser was a great success!! we sold 73 t-shirts, with a goal of 50!! We are so thankful to each and every one of you who bought one!  More, we’re so thrilled that 73 people will be spreading the Ozzie love on January 24th!!

Through the fundraiser, with your help, we raised just over $1100 US for our Trip to Washington this summer!

Also, a HUGE thank you to Tara Johnson, she designed the shirts!! 😉

From the bottom of our hearts, thank you!!



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Moebius Syndrome Awareness Day TShirt Fundraiser

Hey there everyone,

as we begin our fundraising in earnest for the Moebius Syndrome Conference in July of 2014, i was asked if i could have some T-shirts made.  I did some research and found a great fundraising website where there is zero upfront cost from us to have the shirts made.

We are selling T-shirts until January 2nd in time for Moebius Syndrome Awareness day on January 24.  Now, in the past i’ve asked you to wear purple in support of Ozzie and Moebius Awareness.  If you buy one of our shirts, not only are you going to have a snazzy shirt in the proper colour, but you will be doing it for Ozzie!!

front (1) frontthere are two types of T Shirts, a men’s typical t-shirt, and a ladies relaxed Tee.  The prices are $25 US for the mens, $26 US for the ladies, plus shipping costs.

Now, the thing about this fundraiser, is that it’s a crowdfunded fundraiser.  So, we’ve set a goal to sell 50 shirts, which will raise us just over $700, or almost the price of one airfare to Washington!

When you order your shirt, what you are actually doing is “RESERVING” your shirt, in the event that we reach our goal.  You will not be charged until we tip the 50 Tshirt goal, and if we DON’T reach our 50 shirt goal, then no one will be charged, and no will receive a T Shirt, and you’ll have to wear the same purple shirt you did last year!! (BORING!! LOL)

You can order your shirt by following THIS LINK, or any of the other links on this page.

Thank you for all your continuing support!!  And regardless of what you wear on January 24, please make it purple! And send us a picture of you in your purple!!

The Harms Family


Post Vancouver (image heavy)


Hanging out in the Saskatoon Terminal, waiting for our flight

We left for Vancouver Sunday afternoon. Ozzie is a super awesome flier, provided there is plenty of Chocolate milk, a fully charged iPod, and books to read.

IMG_8592The weather was pretty gross when we left, so our flight was delayed, and our connecting flight in Calgary was delayed, which meant when we actually landed in Vancouver it was 6:30…which was 8:30 our time.  Our little man was tired, but he hardly complained, lucky for us.  My Uncle Jim picked us up from the airport and drove us out to Maple Ridge (about an hour out of Vancouver) where we were staying with my Uncle Rob and his family.


Ozzie loves taking pictures of his feet.

My Uncle Rob is only five years older than i am, so all my little cousins are the same age as my kids!  🙂


Brady and Brad havin some breakfast

Brady is 3, his birthday is at the end of October, just weeks after Ozzie’s birthday. He was so excited to play with Ozzie, and brought him cars and transformers to play with, but Ozzie was a little overwhelmed by all the attention and retreated to the safety of mama or dada, whichever was closest. But that’s okay, because Brady was just as happy to be with Brad or I, he’s a total cuddle-bug.


Brady sat down beside me on the couch and said: “Hi, it’s me! Brady!” before climbing into my lap too.

I thought this photo was funny…. Ozzie took it… BLACKMAIL PHOTOS showing Upsy Daisy and Iggle Piggle engaging in questionable activities!! what will Makka Pakka think??

Here’s a photo of Carter, who will be 2 in march, and Ozzie and Brady. It was pretty crazy to see these three boys together, Ozzie is the oldest, and yet he’s the same height as Carter who is a year younger than him… my little shorty man.

IMG_8652 Our appointment was on Monday afternoon, and my Grandma lent us her car so we could drive to the Children’s Hospital and back. It was a little nerve wracking at first, to drive into Vancouver. We had both of our phones going, mine with the step by step instructions, and brad’s with the GPS Apple Maps so we could see our current location.  It was simple enough, once we got past all the construction and the exits and ramps and things.


this is what Nov 4 looked like in Vancouver…

we were a bit early, we wanted to make sure we had a lot of time to get to where we were going… so we had some lunch in the Hospital cafeteria… which had a burger place, and a sushi counter, and pizza, as well as Extreme Pita… along with the the regular cafeteria foods like sandwiches, salads, and soups, etc.  OOOOooooh Children’s Hospital of Saskatchewan… i hope you are taking notes and have some healthier options in your cafeteria….


IMG_8655first up was the eye exam, which Ozzie did okay with.  We could pretty much bribe him with anything as long as he knew he would get the iPod afterwards.

IMG_8656They tried to get Ozzie to follow their lights, and they patched him which he DID NOT LIKE.  This test was not any different than the ones he’s had in Saskatoon.  Pretty standard test, i suppose.


getting his drops, he’s so good at drops

in the next test he had his pupils dilated with dilating drops.  She told us that there’s a bit of scratching on his corneas, so we need to be lubricating his eyes on a more regular basis.  I asked if his corneas were damaged, and she said no.  She likened it to having chapped lips, and if we keep them moist more regularly it will be more comfortable for Ozzie and the corneas will heal.   She also tested his vision, which is excellent.  They confirmed what our ophthalmologist told us in Saskatoon, that Ozzie uses each eye independently, and that his eyes are crossed because the inside muscles of his eye have had no resistance because there’s no information getting to the muscles on the outside of his eye, which is consistent with Cranial Nerve 6 malformation or deletion which occurs in people with Moebius Syndrome.

IMG_8660his pupils were so big, it’s too bad i couldn’t get a better picture.

Finally we met with Dr. Lyons.  He was very nice and gave us a lot of information about what he thinks we should do.  Basically, we’ve missed the window where surgery would have helped his brain to use both eyes together.  He said to have that happen the surgery should have been done around 6 months, with the window closing around 2.5 years.  We were pretty occupied with other things at those times, like keeping him alive.

He said he’s happy to do the surgery, and that there is no rush so whenever we’d like to go forward is when it will happen.  He recommended before he goes to school, to help with socialization, which we sort of agree with also.

Then he walked us through the surgery and what that would entail.

rectusSo, there are 4 muscles groups that move the eye.  The muscles on the inside of his eyes (the Medial Rectus) have been pulling his eyes in, and they may be very tight, almost like leather, he said, because they haven’t had any resistance from the outer muscles (the Lateral Rectus).  He would like to inject those inner muscles with Botulinum Toxin, otherwise known as Botox, to paralyze the muscles first.  With those muscles paralyzed we can see if his eyes will correct out a little bit without having to actually cut him. This is the BEST case scenario.  From there, he would move the upper and lower muscles (Superior and Inferior Rectus) out and away from the inner eye muscles.  This is the most likely scenario.  Having them farther out will give the eyes the resistance they need to stay straight, however it’s not an exact science, and it may take 3-4 surgeries to get the placement right.  If the inner eye muscles are SUPER tight, he may also have to move them, to make them shorter, essentially.

The problem is that each time he needs to move a muscle, he has to disrupt the blood vessels that supply the eyes with blood to keep his eyes healthy.

He said that ideally, he would inject Ozzie’s eyes with the Botox a week or two before the surgery to see how they react, rather than doing it at the same time as the surgery, but he didn’t want us to have to fly out there for a procedure, then fly home, only to come back a week later for the surgery.

So, we asked if that was something that our ophthalmologist could do here in Saskatoon? He said that, yes, she could if she was comfortable putting Ozzie under General Anesthetics (which she’s not – part of the reason we were referred to Dr. Lyons in the first place) but he is going to write her a letter explaining the plan and that he’d like for her to do the injections here.  So hopefully that will work out.

Then Brad got to ask about patching.  We’ve asked about patching, here in saskatoon, but were just told flat out: “Yeah, that won’t do anything”.  So brad asked the doc about patching Ozzie just to see what he’s capable of.  We were also told he wouldn’t be able to blink (which he does, if he thinks about it, something Brad taught him to do) and we were also told he’d never smile (which he does) so who’s to say that Patching might actually help?  We don’t actually KNOW what Ozzie’s capable of until we try.  This doctor said: “It certainly can’t hurt him to try” which made Brad feel great, because if we don’t try before surgery, brad would never be able to stop wondering what might have happened if we had tried.

We were the last appointment of the day, and Dr. Lyons said he appreciated that we came a very long way to see him so he really took the time to answer all our questions and to make us feel listened to and comfortable with him as a surgeon.  We really appreciated that.  We left his office at 5:15, and made our way back home to my Uncle’s house. 

IMG_8670Poor dude was exhausted, and could you blame him? It was practically his bedtime (in Saskatoon) by the time we left the hospital.   Luckily, he went to bed really easily, because in the morning after breakfast we were going home on the airplane!

The next day was rainy and yucky, a total contrast to the beautiful day we had the day before.  My Uncle Rob drove us to the airport on his way to work.  IMG_8671

We are so thankful to have such great families who help us out at times like this.  Seriously! Between my Uncle Jim who picked us up from the airport, my Uncle Rob who housed us and fed us and brought us to the airport, my Grandma who lent us her car – our only expenses were Brad’s plane ticket and the food we bought for traveling. (A HUUUUGE shout out to Hope Air who generously donated Mine and Ozzie’s flights, seriously, thank you)

Ozzie was so happy to be going home, and we were too.  Brad and I were also happy to get free drinks (we were sitting in WestJet’s Plus Section – We upgraded brad’s seat so he’d be in the plus section with Ozzie and i) and a snack! Yay Airplane booze!

IMG_8672 and because our flight touched down in Calgary, but we didn’t actually have to deboard, we got a second round from Calgary to Saskatoon.  Yay Airplane beer!IMG_8731Ozzie didn’t really have any interest in looking out the window, but we did get to see a bit of the rockies as we flew over them before Ozzie shut the window… it was pretty bright for his poor little eyes.

IMG_8727It was nice to get home, even if Saskatoon is covered in snow.  🙂

I also wanted to say a really heart felt thank you to my mom and dad for dropping us off at the the airport and watching Cedric Sunday afternoon, taking him to TaeKwon Do, and keeping him overnight and then taking him to school in the morning.  And to Brad’s mom and dad for picking Cedric up from school and keeping him overnight Monday night, and then picking us up from the Airport Tuesday Afternoon.  We are really blessed with great families.  Thank you so much.  It’s nice to just Not Worry about Cedric because we know he’s with people who love him and that he’s safe. ❤ we love you guys!!

So, now we will look into patching Ozzie and seeing how that goes, and wait to hear from Dr Lyons and/or Dr. Erraguntla regarding the Botox injections, and then we go from there.

We’re Flying Away…

Brad and i are on our way to Vancouver, BC today with Ozzie to meet with his new eye Surgeon. I’m hoping for a totally uneventful flight.


i love how these boys love each other


Birthday photos in the leaves

Here’s a few pictures, though.  Ozzie turned Three in October, and he’s pretty proud of that and will tell anyone and everyone that he’s three now, and that he’s not a baby, he’s a big boy.
As Brad and i are frantically getting all the last minute things together, i’m starting to feel a bit of that ‘mama guilt’ about leaving poor Ceddy behind.  But, he is older now.  He understands more, and he knows that i will be coming back.


Cutest little smile

Also, here’s a few shots of Halloween:


The most adorable pirate of the seven seas




Happy Halloween

i’ll update on what the doc says when we get back! happy trails.

Beads of Courage Colour Festival Fun Run

at the end of last year, i had spent a lot of time on my treadmill running – and i decided that i’d like to run a 5K (starting small) this year.  So i suggested it to my friend who was my work out buddy at the time.  We met through NICU and both our babies have medical ‘stuff’.

Anyway, she countered with “instead of raising money for someone else’s cause, why don’t we organize a run and raise money for Beads of Courage?” (which both our kids are participants of).  It seemed like a crazy idea, but kind of doable… so i agreed.  Let’s do it. How hard could it be?  Tara jumped on the phone and almost instantly had the support of a local running store in Saskatoon (Brainsport can i get a hell yeah?)

but then we didn’t talk about it again, too much, until mid-end of January.  Tara was inspired by all the photos of Color Runs on the internet (which is inspired by the Holi Festival in India) and suggested that our fun be a colour festival, and the symbolism of the runners being covered in colour was not lost on us.  We imagined our runners starting all dressed in white, and by the end, colourful rainbows – just as our kids started out with nothing but their medical ‘stuff’, and how they are accumulating these beautiful rainbow strings of  beads to tell their medical stories.  awesome.

In mid February we got on a conference call with Beads of Courage Canada and got their approval and support – we really just wanted to give back to the program that meant so much to our families.

We had never done anything like this before, and even though we weren’t really sure how to start, but we had some great help from Brian at Brainsport, and then – something magical happened – an amazing woman named Maryann contacted Tara saying she wanted to help us… so we met with her, and she was like an angel! This woman is organized, she has experience with runs and organizing runs, and she…knows…everyone.

She has been an wonderful asset to the run team! I honestly don’t know what we would have done without her.

So, we carried on and over the next couple of months we secured sponsors, ordered our colour, we ordered runners’ shirts, started accumulating swag for the registration bags,

Then in May, a few weeks before the run, we had a hiccup with the city and had to move run locations.  It was instant Panic, but Tara is a machine and she made everything happen and we secured a new location (which, oh my gosh, what an awesome park we used instead of the Meewasin trail) Lakeview Park was totally a better venue for our needs – the course was great, and gave an option for those with smaller kids to do 2.5K as the course was 2 loops, there are two playgrounds, lots of free parking, it really worked out well and i hope we can use the park again next year.

The day before the Sask Marathon, Tara and i sat at a table and talked about the our fun run, and sold Team Bead kits to the people running the Marathon, Half Marathon and the 10K the next day.  (this was not planned… but Maryann, she’s an ideas person, and this idea was great!) Tara and i had brought along our Team Bead kits to assemble for our run, seeing as we would just be ‘sitting there’ most of the day.  So, as we were assembling the kits, and talking about the Beads of Courage program (i say *we* but mainly it was Tara, she’s such a great public speaker) when a group of runners said they were really sad that they weren’t going to be around for the run because they were running a marathon in Jaspar… so, Maryann suggested; “why don’t you buy a set of team beads today and wear them in Jaspar?” and before we knew it, we were selling our team bead kits.  🙂

We raised $600 for Beads of Courage that day, and did get some more online registrations that weekend.

Tara and her daughter, myself, Peter from Roadrunners and Maryann at the Sask Marathon Expo

Tara and her daughter, myself, Peter from Roadrunners and Maryann at the Sask Marathon Expo

Leading up to the final day of registrations, we had about 80 or so people signed up to run, and we were feeling mighty good about that.  We kept being told that for a first year fundraising run, that was an excellent number! so, yay us!

and then.

Registration closed on May 29th at 7pm for our run, and in that day we almost doubled our registrant number.  We were completely sold out.  We had to turn people away!  Now, how can a fundraising run be sold out, you may ask? Well, we bought colour for 200 runners….thinking that would be SOOO MUCH COLOUR, but then, in the end, i think we had close to 170 people running, plus all the children (10 and under were free) and we wanted to makes sure that everyone had signed up got colour thrown at them.  next year, we will order more.

The last week before the run was just Tara and i running around getting last minute stuff done, we spent all of saturday together picking things up and organizing the last minute stuff… My main job was organizing volunteers, and i have to say – that we had… THE BEST volunteers!!!   Thank you, thank you, thank you!!… and then, it was Sunday…

i picked up Tara bright and early, and we arrived at the park and the set up began… and the volunteers arrived, and the colour was divided, and the colour stations were set up (With Tara driving 500 lbs of coloured corn starch to their new homes in open containers…in my van… i wasn’t nervous at all O_O)… then the runners started arriving, and it looked like everything was happening on schedule, with no huge hiccups…. it was amazing.

see you soon

myself, Tara, and Maryann about an hour before the run

set up

Setting up

Runners Arriving!

Runners Arriving!

Just a few words before we start!! (Tara, myself, and Maryann)

Just a few words before we start!! (Tara, myself, and Maryann)

We all sang O Canada together (which i thought was a nice touch, and it signaled to everyone else that we were about to start) and then it was GO TIME!!

Tara and I could not stop smiling! and we decided to do a quick run through the colour stations as well.


Twirling through violet

mi amore

Mi Amore


My whole family came! i was so happy! My mom and dad, my older brother and his wife, my younger brother, and my baby brother and his daughter. What a great day.


My brother in law came with his wife and kids, so awesome to see them there, as well my mother in law and some of her friends.


Cedric ran with grandma most of the way, he had a great time with his cousin Lila!

My family, Before and After!

My family, Before and After!

So, it was an amazing day.  I look at these pictures and i just smile and smile.

We are already planning for next year, thinking of things that could have gone better, ways to improve upon the success of this year… but the absolute best part is that we raised over $13,000 for Beads of Courage! (I don’t have a final number, but i know it’s at least that!)  I am so proud of us.

and i do it for this guy.


Bronchoscopy day

Tomorrow Ozzie is going in for his bronchoscopy, finally. It’s been reschedule twice before, due to illness.  we’re looking forward to having the procedure done, and to have the doctors to a saline wash of his lungs to make sure there’s no nasty bugs living in there.

I’m not looking forward to what tomorrow will bring, in terms of getting up and getting to the hospital, all the while trying to sooth Ozzie as he is fasting as of midnight tonight.

it will not be pretty.

wish us luck.