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MDA’s central Missouri goodwill ambassador speaks on her condition

Each year the Muscular Dystrophy Association chooses children affected by a muscle disease to be goodwill ambassadors.

This year, Anne Page who lives in Jefferson City was chosen for the central Missouri region.

“The children were all in the back of the home, kind of in an alley area, it was just really awful,” said Liz Page, Anne’s mother.

It was in those deplorable living conditions in Haiti, six years ago, Anne met the Pages, her soon-to-be forever family.

“If you ask her to do something she will do it. Between she and probably my oldest kid they are my helping hand,” said Liz.

If being an orphan and adjusting to life in the U.S. with a new language wasn’t enough, Anne was thrown another challenge -this one affecting the way she saw her new world.

“Sometimes when I really concentrate on a word, my eyes well, I started to get double vision,” said Anne.

Two years ago Anne woke up one morning with her eye swollen and bothering her.

But as time went on the eyelid began dropping even more.

“It was a long haul, we spent several thousand dollars on co-pays,” said Liz.

After six months of doctor visits and tests Anne finally had a diagnosis: Myasthenia gravis.

A rare, incurable, neuromuscular disease causing the muscles in her right eye to stop responding.

“It was a relief when she finally got the formal diagnosis to know that it was a condition that could be at least managed with medication,” said Liz.

Medicine though, Anne is not fond of.

“It tastes really bad, especially the pills.” said Anne.

She takes three pills before school in the morning, only after she brushes her teeth.

As the day goes on, I did notice Anne’s eye slowly improving, but still affecting the way she lives her life as fourth grader.

Gym class, first period, was a game of Frisbee- a little challenging for Anne but nothing like what was to come next period, reading.

Terri Kustar has been tutoring Anne in reading and writing since she was in first grade.

“Anne struggles with seeing the letters in the correct order on the page. She has trouble with her right eye because it kind of closes and her eyes will tear a lot when she reads,” said Kustar.

“Writing is a challenge because spelling is very difficult for her,” said Kustar.

“Sometimes I don’t understand the words and then sometimes I do, but it usually is really hard for me,” said Anne.

Kustar said Anne is about two grades behind academically.

While academics are a challenge for Anne, making friends with her bubbly personality isn’t.

However, her mom said there are always those kids who will try to bring Anne down.

“There was a little boy this summer that was poking fun and making his eye droop and saying this is what Anne looks like. I think one of the benefits of being the ambassador and being able to go out and do the muscle what they do is it makes her feel special and probably less ashamed of what the condition is of what she does have,” said Liz.

While Anne’s life started out as a challenge in Hati and continues with this diagnosis, the special research MDA continues to fund has and will continue to help Anne not a miss beat in her 10-year-old life.

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