Melissa's Story Print E-mail

ImageMelissa was born on 12th May 1994 and was a wonderful, contented baby for the first 9 months. At 9 months of age, the onset of epilepsy led to a diagnosis of Tuberous Sclerosis, with tubers in Melissa's brain, heart and kidneys. Her outlook at 9 months through to 2 years was very positive, with Melissa progressing beyond her peers mentally, as well as singing away to her favourite music to the nearest audience or camera.

At two and a half, Melissa started a series of seizures, known as status epilepticus, that caused her to be hospitalised in intensive care. The seizures were not controlled for a number of days.
Melissa is now severely intellectually impaired and fully dependent on her loving family for everyday needs. She still has uncontrolled epilepsy but is generally happy and healthy.
You can read all of Melissa's story at:

http://www.melissas.net/

Although Melissa's story is not typical, it does highlight the importance of seizure control in Tuberous Sclerosis. ATSS continues to work on educating health professionals about Tuberous Sclerosis, but we can always do more.

Melissa's family offers this advice from their experience:

  • Learn anything and everything possible about TSC or whatever the problem.
  • When in Hospitals, if you know things are not going as they should, stand your ground and make sure you are heard, because they have many lives in their hands when they treat 1 person (mothers , fathers, brothers, sisters, grandparents and the rest of the family)
  • Take Plenty of photos of your children and give them lots of hugs and kisses and a lot of LOVE.
  • Never give up hope

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