#pfeiffersyndrome

[craniofacialvegan]

My heart is a bit broken right now. I've been overwhelmed with emotions with regards to my niece Amberlee. I hope she knows that not a minute goes by that Uncle and Auntie aren't thinking of her...

Today, I went to the 2nd Annual CCA wonder picnic hosted by Kim McGrorty Naiman. She's a wonderful and dedicated teacher who is inspired to change the world and to influence more kindness for those born with craniofacial differences. Kim is profoundly loving and cares for all of her students. I will always support her endeavors and I truly believe this annual event will grow into something fascinating - as it already has.

Now I'm here with one of my best friends Shawna Sanders, and her beautiful daughter Sophie who was also born with a craniofacial disorder known as Pfeiffer Syndrome, which is much different from Treacher Collins. But look at how vibrantly energetic and happy this little beauty is.

Had this Wonder Picnic event not been in place last year, I may have not ever met these wonderful people, who've lovingly accepted me into their lives. I'm so grateful.

P.S. I'm staying a night away from home. I miss you Thane and I love you so much! ❤

#vegan #veganism #organic #health #usmcwife #caregiver #veteran #PTSD #marriage #craniofacial #treachercollins #pfeiffersyndrome #craniosynostosis #microtia #birthdefect #disability #love #acceptance #happiness #awareness #perseverance #family #friends

[lestatth]

La vida feliz y única de Hadley

#Hadley #Pfeiffersyndrome https://www.instagram.com/trulyhadley/

[thecaregiverspace]

And then she gave me an ear full of sass. . . . #TeamEmmy #pfeiffersyndrome #specialneeds #trachbaby #choosekind #kind #kindnessmatters #abilitydoesntdefineus #w290c #pfeiffersyndromeawarness #pfightinpfeiffer #pfeifferpfamily #hydrocephalus #shuntlife #medicallycomplex #craniofacial 📷: @theyamqueen https://ift.tt/2rUi5Uc

[myworldmywayblog]

A little look into the life of my 2 year old Pfeiffer girl, Mallory!

[countymn]

Minneapolis Charity Creates Dream Rooms For Terminally Ill Children | minnesota.allembru.com

[craniofacialvegan]

Here's the start of a new album for 2017 craniofacial events. The majority of the annual wonder picnic pictures were taken by photographer and my dearest friend/cranio mom Shawna Sanders! I love you guys!

The event was once again nevertheless amazing, and there were three incredibly resilient cranio children in attendance, Sophie, Jordan and Shane. We all share craniofacial conditions too; Pfeiffer Syndrome, Crouzon Syndrome and Treacher Collins Syndrome.

I have respect for all of these mothers who are all incredibly supportive and selfless for giving their children all that they have. Support is something I didn't have growing up. These events are vitally important. In the long run, the interactive involvement in such gatherings will have such a great impact on these cranio warriors!

We're all sitting in the middle of the heart, which I must say came out beautifully radiant! Thank you to school teacher Kim McGrorty Naiman and everyone who contributed to this wonderful event! ❤

#pfeiffersyndrome #craniofacial #treachercollins #crouzon #microtia #atresia #disability #awareness #specialneeds #craniomom #differences #hearing #antibullying #friendship #kindness #love #acceptance #moms #cranio #bullying #diversity #raredisorders #birthdefect

[thecaregiverspace]

Baby’s first dentist visit. Told everything looks pretty good considering how short her upper jaw is. Pulmonary/vent clinic next! . . . #TeamEmmy #pfeiffersyndrome #specialneeds #trachbaby #choosekind #kind #kindnessmatters #abilitydoesntdefineus #w290c #pfeiffersyndromeawarness #facesofcare #pfightinpfeiffer #pfeifferpfamily #hydrocephalus #shuntlife #medicallycomplex #craniofacial 📷: @theyamqueen https://ift.tt/2KMQpJE

[myworldmywayblog]

The Mal B. from See Kai Run will be available March 2nd! See Kai Run helps provide shoes to our favorite organization called Peach's Neet Feet and last year, Mallory was selected to be a See Kai Run Superstar. All of See Kai Run's Superstars from last year were able to select and name a shoe for the Spring/Summer 16' line to help support Peach's Neet Feet's "Hustle Kindness" movement. When shopping their site, look for the Hustle Kindness logo because 10% of the proceeds from each sale of those select shoes (including Mallory's) will go to support Peach's Neet Feet!

The Mal B. comes in coral and gold and they are great for every little girl, but I'm especially in love with this design because it has a T-strap that velcros over the ankle and the forefoot! Mallory has wide and kinda chubby feet, so I can adjust them to fit her comfortably!

I want to thank See Kai Run and Madison "Peach" of Peach's Neet Feet for everything they've done for our family, helping to spread awareness and continuing the mission to Hustle Kindness!

Here is the link to the Mal B. but don’t order until March 2nd! : http://www.seekairun.com/store/girls/toddlers/mal-b

Check out Peach’s Neet Feet and the mission here: www.peachsneetfeet.com

If you know of anyone who may be interested or just want to help, make sure to give this post a share!

[myworldmywayblog]

My Girl, Mallory.  No matter her battle, her smile and heart are so big.  She’s amazing and everyone should know.