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missed milestones

CCDS Family Stories | Creatine Transporter Deficiency (CTD)

“Grieving the Missed Milestones” – Regina

Byacd_master February 25, 2018October 27, 2022

“Grieving the Missed Milestones” – Regina We’ve all been there. Those moments when we witness our kids- or grandkids- struggling…

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Beth with Jerry and Benny at birth
CCDS Family Stories | GAMT Deficiency

“Picturing the Future” – Beth

Byacd_master January 15, 2018October 15, 2025

“Picturing the Future” – Beth During the winter break, we undertook the daunting task of organizing digital photos from the…

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CCDS Family Stories | Creatine Transporter Deficiency (CTD)

“Getting Better” – Amy

Byacd_master July 6, 2017October 27, 2022

“Getting Better” – Amy Ben’s recent Creatine Transporter Deficiency (CTD) diagnosis has hit me hard emotionally, so I thought that…

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Kelly and Toby sticking out his tongue with a lollipop
CCDS Family Stories | GAMT Deficiency

“What About Me?” – Kelly

Byacd_master May 29, 2017October 15, 2025

“What About Me?” – Kelly I’ve made no secret that our family life is somewhat different from the norm. Our…

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CCDS Family Stories | Creatine Transporter Deficiency (CTD)

“The More Things Change…” – Nathan

Byacd_master May 9, 2017October 27, 2022

“The More Things Change…” – Nathan Greetings friends! Well, it is that time again as I am once more honored…

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Benny hugging Beth
CCDS Family Stories | GAMT Deficiency

“Saying ‘I Love You'” – Beth

Byacd_master May 4, 2017October 15, 2025

“Saying ‘I Love You’” – Beth It wasn’t until this school year, Benny’s 7th grade year, that we realized he…

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Young Levi on a scoot along toy
CCDS Family Stories | GAMT Deficiency

“1% Chance” – Laura

Byacd_master February 23, 2017October 15, 2025

“1% Chance” – Laura GAMT is so rare, just getting diagnosed seems to be quite an ordeal. I like hearing…

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Isaac Sitting on Holly's Lap
CCDS Family Stories | GAMT Deficiency

“Why Getting a Diagnosis Is So Much More Than a Label” – Kelly

Byacd_master February 17, 2017October 15, 2025

“Why Getting a Diagnosis Is So Much More Than a Label” – Kelly My daughter Holly (9) & son Isaac…

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CCDS Family Stories | Creatine Transporter Deficiency (CTD)

“On Valentine’s Day” – Nathan

Byacd_master February 14, 2017October 26, 2022

“On Valentine’s Day” – Nathan Well, it’s here friends, February 14th , and according to the automatic reminder on my…

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CCDS Family Stories | Creatine Transporter Deficiency (CTD)

“My little guy” – Jane

Byacd_master February 7, 2017October 26, 2022

“My little guy” – Jane My little guy is now 8 years old and was diagnosed with Creatine Transporter Deficiency…

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