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Silhouette of child standing on beach at sunset

Silhouette of child standing on beach at sunset

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The Decision We Wish We Could Make With Our Daughter Rather Than For Her

Cady walks out of the school gate holding onto an adult’s hand. Legs wide apart and feet in-turned, her gait is the first giveaway to a casual observer that something is not quite ‘right.’ Her neutral expression shifts when she sees me; maybe not enough for someone else to notice it, but I see it. [...]

Story

Connecting and Collaborating: Lessons From a Decade of Caregiving and Activism

Connecting and Collaborating: Lessons From a Decade of Caregiving and Activism

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Connecting and Collaborating: Lessons From a Decade of Caregiving and Activism

If you’re like me, the holiday season is an emotional time. Last month marked the 10th Christmas, Chanukah and New Year we celebrated with Elliott, our son who is profoundly affected by SCN8A — one of the many rare developmental and epileptic encephalopathies (DEEs). I enjoyed the holidays, but no matter what the calendar says, [...]

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DoctorShopping 3y

When dealing with a number of conditions/comorbidities, do you find one doctor or many? If the latter, how to get them all to communicate? Thoughts?

I am the parent of a teen suffering from a number of conditions the initial of which was/is NDPH. I believe we're at a crossroad in her care and am thinking about how to proceed. Right now, we have a number of doctors - none that I'm thrilled about for various reasons and none are necessarily specialists in her specific disorder(s). Based on your experience, would you recommend seeing specialists for her individual conditions, going to an inpatient program to try to deal with all conditions holistically, or some other model?

#DoctorShopping
#ParentAdvocacy
#Comorbidities
#careplan

2 comments

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tellushowyouaredoing 4y

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#CheckInWithMe Parents of kids with #RareDiseases

Let me know how you are doing! Life gets crazy busy caring for our kids that we often forget to check in with ourselves.

Personally, I am exhausted. Between my oldest daughter's schedule and making sure my youngest gets in PT, OT, and Speech Therapywith us at home in addition to her actual therapy appointments makes for a long day after work.

#tellushowyouaredoing #SpecialNeedsParenting #ParentAdvocacy #rarediseasewarriors #RareDiseaseParenting

1 comment

Story

Mom holding baby son while standing in kitchen near sink

Mom holding baby son while standing in kitchen near sink

Jacey Ross Reid

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7y

A Letter of Love to My Son With Hydrocephalus

My Sweet Davey, At the time I’m writing this letter you are 2 years old. You have endured more in your 2 years than what seems most people do in a lifetime. You have survived seven brain surgeries and a horrible infection called bacterial meningitis. Davey, you are my hero and don’t you ever forget [...]

Story

How to Become a Successful Parent Advocate for Your Child With Special Needs

How to Become a Successful Parent Advocate for Your Child With Special Needs

Jennifer Iannuzzi

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7y

How to Become a Successful Parent Advocate for Your Child With Special Needs

The day my daughter was diagnosed with a rare genetic syndrome was the day I began my self-taught training program for special needs advocacy. I had much to learn about her diagnosis and much to change about my approach (I usually like to please people) and I knew the process would be intense. I had [...]