Today officially starts Leukodystrophy Awareness Month! Todays FACT Of The Day is a little primer how Ledukodystrophy entered our lives. Not every fact I post will be a book in length. But this one is. I appreciate you sticking it out til the end: In 2003, Brittany was about to turn 13 and started to have issues with her speech. It was a subtle thing. If it werent so subtle, maybe I would have expected what was to come. One day we simply noticed that every once in awhile she was slurring her speech - I put that in quotes because that wasnt really what was happening, according to the speech pathologist, but it was the closest to what my medically uneducated mind could say to describe it. Randomly she just wasnt able to be as easily understood...and by randomly, I mean it came and went and when it happened I or my ex husband would say There! did you hear it when she said that? when she left the room...and then we wouldnt hear it again for a few days. The only other person that noticed it and commented on it was my friend, Mel - probably because we spent so much time together. Over the next few months, it became more frequent and Brittany became more self conscious. Thirteen is an awful age to feel different - and THAT was where most of our concern lay. We consulted our pediatrician, who without hearing it herself, sent us to get her hearing tested. Everything turned out fine, and we let it go ... briefly. About this time, if Brit left me a voicemail on my cell phone, or called it and spoke directly to me, I could not understand her. The pediatrician contacted the speech therapist at school - a position that was held by one woman, covering ALL of the schools in the district. So, the one day every other week she was available, she met with Brit...and never experienced the random speech problems. So at this point what we have is bunch of professionals telling us everything is fine, and a mother - me - telling everyone that something is wrong. I know my kid, and this isnt right. Most alarmingly to me, my honor student, softball and volleyball playing, cheerleading, middle school home coming queen, is so self conscious after being asked to repeat herself so often, that she no longer raises her hand in class. No longer calls her friends on the phone. In September of 2004, our pediatrician was leaving to accept a faculty position in Ohio - and her last kind act for our family was to send Brit to an ENT because of my worry. The Ear Nose and Throat guy flooded our world with light when he examined her and immediately said No problem - her palate isnt closing correctly. Easy fix! We have to schedule you an MRI, you know - to just rule out any organic causes...then we can start treating her. So, we waited for the call to schedule more ENT visits - not the results of the MRI. Because it was just a formality, you know. Then the call came. Something showed up on the MRI. Weve made you an appointment with a pediatric neurologist. The neuro, Dr.Pinto-Lord told me Your daughter has problems with her white matter. She held up the MRI film and showed me a large white/grey area in the middle of my daughters brain that shouldnt have been there. All I kept thinking, while I started to hyperventilate, was It looks like a butterfly Dr.Pinto-Lord said Your daughter has Leukodystrophy. Thats when our world went dark. Four years later, after monthly tests, we found out her specific LD was Alexander Disease - and that it it incurable, untreatable - and fatal. Help #TurnSeptemberBlue for #LeukodystrophyAwareness #AlexanderDisease #TeamBrittany
Posted on: Mon, 01 Sep 2014 13:19:24 +0000
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