Ben’s recent Creatine Transporter Deficiency (CTD) diagnosis has hit me hard emotionally, so I thought that an honest account of these emotions could be cathartic. I have gone from feeling sorry for myself, to feeling numb, to feeling a bunch of different emotions – some rational and others not so much. Ben was just diagnosed […]
Not having a diagnosis for your child when you know something is wrong is like driving your car somewhere you’ve never been before with no directions. All you know is the general direction, and you keep moving that way, but you’re really not sure you’ll make your destination because you don’t know how to get […]
Greetings friends! Well, it is that time again as I am once more honored to be a part of your daily intake of reading. Although I often share the awesome craziness of our lives and how our three boys with CTD have gone through some tough spells, everything is on the right track now and […]
GAMT is so rare, just getting diagnosed seems to be quite an ordeal. I like hearing everyone else’s journey, and having this connection. Here is our story! Before Levi was born, I had a nervous feeling; anxiety that something was “off” but at each ultrasound things looked great and he was born a healthy baby […]
My daughter Holly (9) & son Isaac (4) have recently been diagnosed with Guanidinoacetate Methyltransferase Deficiency (GAMT). What a label, hey? Certainly sounds more impressive than Global Developmental Delay, Autism, or just plain old Epilepsy that we were ‘gifted’ with before.
Well, it’s here friends, February 14th , and according to the automatic reminder on my phone, that means it is time to stop at the store and give Hallmark their due for the year. Now I am not saying that I am not romantic, but I am a guy, so romantic is a relative term. […]
My little guy is now 8 years old and was diagnosed with Creatine Transporter Deficiency (CTD) at 19 months of age – well before we were emotionally prepared to deal with the implications of such a diagnosis. “Will he need extra help in math class or will he not be in a math class?” was […]
My husband likes tattoos. Really likes them. I do not have one spot of ink on my body. An indecisive person like myself is not a good candidate for tattoos. It’s a struggle for me to decide on where to eat out, so choosing an everlasting piece of art to adorn my body is not […]
When my son Spiro was first diagnosed with CTD, I thought it would mean better management, a quick fix, and a real turn around for my son’s symptoms. We were being seen by Canada’s leading children’s hospital. I remember that appointment with the neurologist who initially told me about Spiro’s CTD. I was alone. My […]
There are certain days that have a significance in all of our lives. Something that happened on a day that changed the path we took, or influenced our perspective, our choices, or future. For me, that day is today. For the past seven years January 13th has been a day of reflection. This is the […]
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