Hope is not a strategy, but it offers light
Hope is not a strategy, but it offers light I can remember being full of hopes and dreams when each…
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“Does It Get Easier?”—Chelsi
“Does It Get Easier” —Chelsi Does living with CTD ever get any easier? When the burst of behaviors starts and…
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“Notes from the 2023 Virtual Conference” —Kim
Notes from the 2023 Virtual Conference, General Sessions –Kim In 2022, I visited a full CCDS symposium for the first time….
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“How Gio’s Diagnosis Affected Us” -Sylvia
“How Gio’s Diagnosis Affected Us” –Sylvia In 2019 I was planning to have a hysterectomy due to my endometriosis, but…
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No Limits
“No Limits” — Lacy One of the hardest things about learning your child has a disability is the limits that…
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“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…
