“Our Experience of CTD” – Kayla
“Our Experience of CTD” – Kayla We’ve shared that Creatine Transporter Deficiency (CTD) can cause seizures, speech, intellectual, and motor…
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“Awareness” – Lacy
“Awareness” – Lacy I find myself thinking a lot about awareness. It has been a buzzword in our lives for…
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“Our Life with Epilepsy” – Nathan
“Our Life with Epilepsy” – Nathan Hello again, CCDS family, sorry it has been a while since I have contributed…
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“Bye, mom” – Nancy
“Bye, mom” – Nancy “Bye mom!” These were words I had longed to hear for nearly two years. Our youngest…
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“Rare Diseases” – Lacy
“Rare Diseases” – Lacy Being a parent of a child with a rare disease has its unique challenges. There are…
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“The Carousel” – Nancy
“The Carousel” – Nancy The bell rang, the music started, and we began moving slowly. The expression on his face…
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“My Worst Fears” – Chelsi
“My Worst Fears” – Chelsi Do you ever feel like all the work we do for our kiddos is not…
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“The Rare Sibling Experience: NORD Webinar” – Erin
“The Rare Sibling Experience: NORD Webinar” – Erin The National Organization for Rare Disorders (NORD) recently hosted a webinar on…
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“Coping With the Fear” – Nancy
“Coping With the Fear” – Nancy I had just poured myself a cup of coffee and settled in for the…
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“New Rules for our School” – Randi
“New Rules for our School” – Randi We are very fortunate in our state to have scholarships for children who…
