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a mother sitting with her son with a disability on her lap
a mother sitting with her son with a disability on her lap
Adelle Spindlove
 • 
Rare Disease
November 12, 2021

The Change in Social Circles While Parenting a Child With a Disability

Before my son was diagnosed with a rare genetic syndrome that ultimately meant he would have a learning disability for life, we were told that he may need surgery. In very close succession we learned everything we could about craniosynostosis and hydrocephalus and braced ourselves and our friends for a possible, imminent operation. Friends from [...]
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Children's Craniofacial Association
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@ccakids
December 7, 2020
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What makes you a fighter?

What do you do that makes you strong? What steps do you take? ##craniofacial #cleftpalate #cleftlip #cleftstrong #choosekind #apertsyndrome #crouzonsyndrome #pfeiffersyndrome #facialpalsy #facialparalysis #hemifacialmicrosomia #goldenharsyndrome #microtia #artesia #craniosynostosis #treachercollins #antleybixlersyndrome #millersyndrome #nagersyndrome #neurofibromatosis #moebius #pierrerobinsequence #fibrousdysplasia #chronicillness #raredisease

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Nonprofit
Children's Craniofacial Association
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@ccakids
craniofacial November 21, 2020
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Hard things...how will you overcome?

It’s not impossible. Make it possible. Share how below

#craniofacial #cleftpalate #cleftlip #cleftstrong #choosekind #apertsyndrome #CrouzonSyndrome #pfeiffersyndrome #facialpalsy #facialparalysis #hemifacialmicrosomia #goldenharsyndrome #microtia #artesia #craniosynostosis #treachercollins #antleybixlersyndrome #millersyndrome #nagersyndrome #neurofibromatosis #moebius #pierrerobinsequence #fibrousdysplasia #chronicillness #raredisease

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Nonprofit
Children's Craniofacial Association
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@ccakids
craniofacial November 15, 2020
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How do you rise?

#craniofacial #cleftpalate #cleftlip #cleftstrong #choosekind #apertsyndrome #CrouzonSyndrome #pfeiffersyndrome #facialpalsy #facialparalysis #hemifacialmicrosomia #goldenharsyndrome #microtia #artesia #craniosynostosis #treachercollins #antleybixlersyndrome #millersyndrome #nagersyndrome #neurofibromatosis #moebius #pierrerobinsequence #fibrousdysplasia #chronicillness #raredisease

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Nonprofit
Children's Craniofacial Association
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·
@ccakids
craniofacial November 15, 2020
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To live...

Will be an awfully big adventure. #craniofacial #cleftpalate #cleftlip #cleftstrong #choosekind #apertsyndrome #CrouzonSyndrome #pfeiffersyndrome #facialpalsy #facialparalysis #hemifacialmicrosomia #goldenharsyndrome #microtia #artesia #craniosynostosis #treachercollins #antleybixlersyndrome #millersyndrome #nagersyndrome #neurofibromatosis #moebius #pierrerobinsequence #fibrousdysplasia #chronicillness #raredisease

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Children's Craniofacial Association
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@ccakids
November 12, 2020
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Sometimes progress can feel slow...

Sometimes progress may feel slow, but it actually may still be happening. How are you progressing and improving your life? #craniofacial #cleftpalate #cleftlip #cleftstrong #choosekind #apertsyndrome #crouzonsyndrome #pfeiffersyndrome #facialpalsy #facialparalysis #hemifacialmicrosomia #goldenharsyndrome #microtia #artesia #craniosynostosis #treachercollins #antleybixlersyndrome #millersyndrome #nagersyndrome #neurofibromatosis #moebius #pierrerobinsequence #fibrousdysplasia #chronicillness #raredisease

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Nonprofit
Children's Craniofacial Association
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@ccakids
craniofacial April 1, 2020
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What positive thing have you learned about yourself during the COVID-19 pandemic?

What positive thing have you begun doing that you hope to maintain today and for years to come? #craniofacial #cleftpalate #cleftlip #cleftstrong #choosekind #apertsyndrome #CrouzonSyndrome #pfeiffersyndrome #facialpalsy #facialparalysis #hemifacialmicrosomia #goldenharsyndrome #microtia #artesia #craniosynostosis #treachercollins #antleybixlersyndrome #millersyndrome #nagersyndrome #neurofibromatosis #moebius #pierrerobinsequence #fibrousdysplasia #chronicillness #raredisease

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Children's Craniofacial Association
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@ccakids
March 30, 2020
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What the first thing...

You want to do after the stay- at-home orders are lifted?

I’d like to go to a baseball game with family.

#craniofacial #cleftpalate #cleftlip #cleftstrong #choosekind #apertsyndrome #crouzonsyndrome #pfeiffersyndrome #facialpalsy #facialparalysis #hemifacialmicrosomia #goldenharsyndrome #microtia #artesia #craniosynostosis #treachercollins #antleybixlersyndrome #millersyndrome #nagersyndrome #neurofibromatosis #moebius #pierrerobinsequence #fibrousdysplasia #chronicillness #raredisease

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A mother cradling her baby and reading a book in the NICU.
A mother cradling her baby and reading a book in the NICU.
Amanda Schuster
 • 
Craniosynostosis
January 17, 2020

To the NICU Nurse Who Went the Extra Mile for My Daughter

Dear Cheri, When Emmy was born, our whole world turned upside down. That’s true of many parents, but having a child with a syndrome that causes a critical airway and various challenges at birth, things can go from no big deal to emergent in a flash. We went from a normal existence with our son [...]
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Nonprofit
Children's Craniofacial Association
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@ccakids
craniofacial November 5, 2019 Sent from app
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