Monday, May 25, 2009

This is dedicated to Maranda! What a sweet child.



This is dedicated to Maranda! Tonight is her night, with the steak night fundraiser at the Press Box Sports Bar from 4:00pm to 9:00pm at 909 Albert Street North. Tickets are $20. each. Come on Regina, lets get together and turn up tonight.

Please take a minute to read the new few paragraphs and get to know Maranda a little better. This is from her family: "We knew Maranda had health problems, but it would also be fair to say that we did not fully understand the extent of her illness. It's one thing to be told a child has microcephaly and a reduced life expectancy, but a completely different thing to LIVE it.

Maranda has been through all kind of tests, most notably her neurological exams, which include CAT scans, MRI's of her brain and regular EEG's (electroencephalographs) to measure her brain waves.We now know that she is having many different kinds of seizure activity in all parts of her brain. What we thought were sleep problems turned out to be seizures and what we thought was night time gastric reflux, was actually vomiting associated with the seizures. Each time a new seizure symptom presents itself we call our neurologist directly and, every morning if she isn't up at the crack of dawn, we creep into her room to make sure she is still breathing.


Some mornings our hearts stop until we see that she is awake. She is on a number of medications to reduce inattention, impulsivity, hyperactivity and seizure activity. This means remembering a list of medications and administering them about every four hours. Maranda is a vulnerable child. She has no sense of danger, and no understanding of yesterday, today, or tomorrow. She has many developmental delays most notably delayed fine motor skills, and intellectual challenges.

So far, she has been diagnosed with microcephaly, ADHD, OCD, vision problems, and seizure disorder, which are all symptoms of a syndrome that has yet to be named. She does have an amazing 'savant' memory. Like the character in the movie "Rain Man," she can remember names of people, places, football players and other lists with amazing clarity. She is charming to converse with and entertaining to watch. Maranda is an incredible child who has come so much further than anyone thought she would, and we are so proud of her."