A Family Resource on Tuberous Sclerosis Complex

Luke’s Tuberous Sclerosis Page

A Family Resource on Tuberous Sclerosis Complex
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Michelle’s Story

Michelle Marie Sala was born in McAllen, Texas on January 18, 1980. When she was born, she received the highest rating in the nursery and I had a normal birth. Our doctor was keeping an eye on my progress, as I had lost a previous little girl (stillborn) and I was on medications for seizures. For a year, we had not realized that anything was wrong with Michelle, until she turned a year old. Her babysitter noticed the seizures first. After alot of tests, Michelle’s doctors said she was epileptic and we went on various courses of medication. My father teaches Anesthesia and my mother is a R.N., and they were both concerned about the Cafe Ole spots and patches on Michelle and told me that she needs to see some specialists.

In the meantime, our family had moved to the Houston area and we began testing at Texas Children’s Hospital. Michelle saw many specialists. The day the doctors told us the bad news, her neurologist started to cry and held me while he said that Michelle would probably only reach the age of 18. She would never read or write or do any math. Michelle is 17 years now and so far so good. She is a very brave teenager, considering she has had 15 surgeries. She needs to have more laser surgery on her face to remove the angiofibromas again. Every year, she has MRI’s, EEG’s, kidney ultrasounds, along with blood and urine tests. Michelle has moderate retardation, attention deficit, seizures, and other health impairments.

Lately in school and at home she is speaking much better. Her speech is affected. She has lesions in her brain, in both eyes, and her first lesion was discovered in her right kidney. Michelle is very active and is quite healthy so far considering her diagnosis. Michelle’s diagnosis is considered “self mutation,” and as far as the genetics go, I did not have any of the symptoms myself. Not getting any help from her father’s side, we could not predict what side she may had acquired this from and had to move on.

Michelle’s stepfather and I love her very, very much and being her Mom, I couldn’t be more proud of her. She has taught us both so much and also to appreciate what we have with her. Being Tuberous Sclerosis parents is a very humbling experience. Thank you everyone for all your support.

If you wish to reply to this, you can e-mail her mother at bcslawinski@juno.com

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This home page is intended to be a family resource for families affected by Tuberous Sclerosis. It does not intend to constitute medical advise. Viewers are warned not to take any action with regard to medical treatment relying on the information provided on this page without first consulting the patient’s physician.

    Luke’s Tuberous Sclerosis Page

does not recommend any treatment or health care plan.

Deanna Runyan-Wall
E-mail address: deannadawn@lukets.org

Last updated: April 5, 2008 Created: December 5, 1996

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