Spotlight on AHC Champion Drew (TX, US)

Spotlight on AHC Champion Drew (TX, US)

Drew was born in early 2010 and had a fairly healthy, uneventful first year.  We were concerned that he was barely squeaking by with milestones, but his doctors reassured us that he was within the typical parameters for development.  At 15 months, Drew had his first seizure.  We ran the gamut of tests and the neurologists concluded that this was a one time event.  The told us that 1 in 10 people have a seizure in their lifetime and not to worry.  The very next week, Drew started walking!  Again, he was just squeezing in under the cut-off for a delay.  Over the next 10 months, Drew’s behavior became concerning.  He screamed all night, was aggressive, had times when parts of his face would flush bright red, and his development slowed even more.  

At 25 months Drew had his first episodes of hemiplegia.  We recorded them on video and his neurologist concluded these were episodes of Todd’s Paralysis occurring after seizures.  Of course, this confused us because we had not seen any seizures!  Again at 25 months old, Drew had a seizure lasting about 8 minutes and then was paralyzed on his left side.  We rushed via ambulance to the ER where they suspected a stroke.  After many scans and tests, it was again concluded that Drew had Todd’s Paralysis after a seizure.  This time, we had seen a seizure, so it made sense.  He started treatment for epilepsy at this time.  The left sided paralysis took 3 months to fully resolve.

Over the next six months, Drew continued to have both seizures and episodes of hemiplegia.  At his follow up MRI, it was revealed that Drew suffered from hemiatrophy of his right hemisphere.  During a routine neurology visit, Drew had an episode of hemiplegia after a minor head bump (a trigger for him).  Thankfully, the chief epileptologist was in the office that day and he took one look at Drew and diagnosed AHC.  He told us it was a migraine variant, ordered genetic testing, and prescribed Flunarizine.  The results came back with a novel mutation on ATP1A2.  This mutation is associated with both AHC and Hemiplegic Migraine type 2.  

Drew has had many ups and downs since.  He’s had several heartbreakingly severe episodes that have left him with more hemiatrophy and regression.  We are determined to do everything in our power to find an effective treatment.  We’re so thankful for CureAHC and for Dr. Mikati and his team at Duke who are researching all aspects of AHC, including a new project focusing on the ATP1A2 gene!

If you’d like to donate to help fund the ATP1A2 mouse model project at Duke, please click here:

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