If someone told me at the beginning of last November, just how much our lives were going to change in a very short space of time, I would have laughed in their faces. Or cried. I’m not quite sure which – but I certainly wouldn’t have believed them.
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 […]