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Who is Ella?

Ella was born on June 22, 2001. A beautiful, wonderful baby.

Within 24 hours she was diagnosed with hemihypertrophy, a condition that has people have asymmetrical features in some area of their body.

The suspicion was raised that it went further than that.
Two weeks later (an MRI and EEG test) our worst fears were confirmed. Ella has a condition known as hemimegalencephaly (HME). A rare disorder in which half of the brain is larger and usually abnormal.

It is unknown exactly what the implications are for her development. Not good things that’s for sure.
We were devastated to learn that our daughter was born with the cards stacked so heavily against her.

For Ella’s Story from the beginning… Click Here

Ella’s had an Hemispherectomy on May 1 2002 we are holding our breath for her recovery. She has also gone through a series of reconstructive plastic surgeries with more probably in her future.

Why do this?

  • As a therapeutic activity for us. Ella’s condition leaves us feeling very helpless.
  • As a means of tracking Ella’s development. It is important to us to note the steps in her development and recognize the changes.
  • As a source of information for parents who find themselves in a similar situation.
  • As a place where people can contact us with information, advice or share their experience

Please feel free to leave us comments on any posts or on the guestbook. It is always much appreciated.

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