Moebius Syndrome Awareness Day 2014
Moebius Syndrome Awareness Day 2012
This is the story of our family – Mama (Laura), Daddy (Brad), big brother Cedric and Baby Ozzie – who has Moebius Syndrome; a congenital nerve disorder affecting cranial VI and VII nerves controlling the lateral movement of his face.
Moebius Syndrome effects 2-20 people in a million. That’s right, a million.
We live in Saskatoon, Saskatchewan – where the population of the entire province is roughly one million people.
This blog is to keep our families and friends up to date on Ozzie’s progress, as well as to keep you all informed of our fundraising efforts as we plan to attend the 2014 Moebius Syndrome conference in Washington, DC.
i'm supporting ozzie ♥ 
Hey Guys!
Mom (Anna) just showed us the adorable video of Ozzie laughing, too cute! I know about the blog now, so I will check it out often! What a great idea!
Love from Jason, Haley and Ryan Friesen
Hi, just wanted to say, thanks so much for sharing your story with the blog-world.
Found your blog via Leven’s and I soooo plan on picking up some Ozzie’s Blend during their fundraiser. I love Leven’s and now even more after hearing how supportive they have been for you and your family.
A friend of mine had a little boy in March and he has a rare condition as well, Hirschsprung’s Disease and Congenital Centro-Hypoventilation Syndrome (I hope I got that right). It’s amazing how she has talked about having to advocate for yourself and your child and figure out yourself how to navigate the medical system. I’ve read a lot of similarities on your blog (going through archives) and listening to her stories.
I’ll be following your journey. Your family is beautiful and you are all SO strong.
Sending positive, healing, strength vibes your way. 🙂 xo
Hi Laura!
We’ve met before through Shanna. I’m not in Saskatoon anymore and don’t really need to order coffee but is there any other way we can contribute to your efforts with a cash gift? Much Honour to you for all you are doing for your beautiful son and for Moebius education!
Thank you Jen,
We have been able to receive e-transfers to my email address – lauraharmz (at) gmail (dot) com. This seems to be the easiest way that we’ve come across so far.
HI,
I would love to talk with you about a fundraising idea for Ozzie, I may be able to help.
Sincerely
Mandy
hi Mandy,
thanks! you can email me at lauraharmz @ gmail.com
Hi Laura,
I have recently come across your blog while researching and seeing if anyone else in Canada had the same thing. We are from Ontario. Your blog reminds me of what we are going through now with our son. His name is Jake and he is 5 months old. He has been diagnosed with Moebius syndrome. Looking at your photo of Ozzie smiling looks a lot like Jake’s little smile. It is nice to know there is others out there that know what we are going through!
Haha there’s nothing wrong with it
Hi, i just read your blog finally ice to see some information about this condition. My son Jax was diagnosed a few weeks ago with it because i started to notice his facial paralysis and then he began to stop breathing, which we found out later is from his spit he cant swallow. He just turned 2 months a few days ago and he’s mucus and breathing is getting worse. Unfortunately our doctor wont do anything till the fall but your blog gives me hope. Ozzie is such a beautiful child good luck
Laura, I’m so glad 2013 is starting out well for you and hope the year continues great! I’ve enjoyed reading your articles.
Hello,
I am a Certified Biofeedback Practitioner in Vancouver, BC. I am looking to give volunteer biofeedback sessions on a child with Strabismus, in the hopes it will give an improvement, without the need for surgery.
Your son is very young and it is quite possible the sessions will have a good effect. I read you are coming to Vancouver in November , and if you would like a complimentary consultation and session, that would be my pleasure. Should Ozzie not be a good candidate for surgery, or you are interested in trying biofeedback first, I would recommend staying in Vancouver over a couple weeks, and I would aim to have him receive 20-30 sessions. Biofeedback is a non-invasive, relaxing technique. On my website you can find pictures of a man I am treating using an eyepatch which I would use for Ozzie as well.
Should you need assistance with accommodation while staying that long in Vancouver I can reach out to the local community and see if we can get you and Ozzie some low cost or free, yet comfortable accommodation.
I cannot guarantee any results however biofeedback has been approved as safe by Health Canada and the FDA and has been shown to be effective with various health problems. I’ve worked on eyes and vision before with positive results. Again , please feel free to contact me with any questions and I am more than happy to meet with you when in town .
Regardless, all the very best to you and your young family,
Carla Vanderhorst
Certified Biofeedback Practitioner
B.A. Psych
Thank you for your courage, strength & devotion ~ our son Jon was born with Moebius ~ he is 33 & our pride & joy ~ so important for us to share & reach out ~ God bless!!!