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CCDS Family Stories

CCDS Family Stories | Creatine Transporter Deficiency (CTD)

“#MyGivingStory” – Chuck

Byacd_master December 17, 2018December 5, 2022

“#MyGivingStory” – Chuck This story was shared with #MyGivingStory in connection with the Giving Tuesday initiative. #MyGivingStory shares the stories…

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CCDS Family Stories | Creatine Transporter Deficiency (CTD)

“Patient Champion” – Amy

Byacd_master November 16, 2018December 5, 2022

“Patient Champion” – Amy A couple of weeks ago, we participated in something special – our Ben was a Patient…

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CCDS Family Stories

“Hook ‘em Horns” – Laura

Byacd_master November 5, 2018October 28, 2022

“Hook ‘em Horns” – Laura I know those who attended the conference in Texas this summer will all agree that…

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CCDS Family Stories | Creatine Transporter Deficiency (CTD)

“Family Vacation” – Shelly

Byacd_master October 8, 2018October 28, 2022

“Family Vacation” – Shelly We just had our first big family vacation. Overall it really was great, we had good…

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A mother holding her son while sitting on a lawn.
CCDS Family Stories | Creatine Transporter Deficiency (CTD)

“Life With CTD” – Chelsi

Byacd_master September 14, 2018October 15, 2025

“Life With CTD” – Chelsi Hello, my name is Chelsi and I have CTD. 23 years have come and gone…

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CCDS Family Stories | Creatine Transporter Deficiency (CTD)

“The Feeding Tube Post” – Nathan

Byacd_master August 20, 2018October 27, 2022

“The Feeding Tube Post” – Nathan Good day friends! For this blog, I thought I would write about something I…

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Sonnet walking smiling
CCDS Family Stories | GAMT Deficiency

“Enriching Her Life With Therapies” – Randi

Byacd_master June 29, 2018October 14, 2025

“Enriching Her Life With Therapies” – Randi Since Sonnet wasn’t diagnosed with GAMT until she was seven-years-old, she is severely…

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CCDS Family Stories | Creatine Transporter Deficiency (CTD)

“Let It Be” – Amy

Byacd_master June 21, 2018October 27, 2022

“Let It Be” – Amy As a mom of a child with a rare condition, particularly of my Ben who…

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CCDS Family Stories | Creatine Transporter Deficiency (CTD)

“That Friend” – Shelly

Byacd_master June 15, 2018October 27, 2022

“That Friend” – Shelly I feel like all us parents of special need kiddos have that one person who is…

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“Summer!” – Laura
CCDS Family Stories | GAMT Deficiency

“Summer!” – Laura

Byacd_master June 11, 2018October 14, 2025

“Summer!” – Laura Summer is the most coveted time of the year around our house… AND IT’S HERE!!! Both boys…

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