“Share Your Rare” – Regina
“Share Your Rare” – Regina I had the recent pleasure of attending an event hosted by the Oklahoma Rare Action…
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“WHO’S GOING TO PROTECT HIM WHEN I’M GONE?” – Nancy
“WHO’S GOING TO PROTECT HIM WHEN I’M GONE?” – Nancy Over-protective. Controlling. Helicopter Mom. Whatever you call it, that’s who…
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“Getting Better” – Amy
“Getting Better” – Amy Ben’s recent Creatine Transporter Deficiency (CTD) diagnosis has hit me hard emotionally, so I thought that…
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“What About Me?” – Kelly
“What About Me?” – Kelly I’ve made no secret that our family life is somewhat different from the norm. Our…
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“The More Things Change…” – Nathan
“The More Things Change…” – Nathan Greetings friends! Well, it is that time again as I am once more honored…
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“Saying ‘I Love You'” – Beth
“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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“1% Chance” – Laura
“1% Chance” – Laura GAMT is so rare, just getting diagnosed seems to be quite an ordeal. I like hearing…
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“Why Getting a Diagnosis Is So Much More Than a Label” – Kelly
“Why Getting a Diagnosis Is So Much More Than a Label” – Kelly My daughter Holly (9) & son Isaac…
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“On Valentine’s Day” – Nathan
“On Valentine’s Day” – Nathan Well, it’s here friends, February 14th , and according to the automatic reminder on my…
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“My little guy” – Jane
“My little guy” – Jane My little guy is now 8 years old and was diagnosed with Creatine Transporter Deficiency…
