Serving people with intellectual disabilities since 1971.

Melissa

MelissaMelissa at graduation [click to enlarge]Melissa was born in 1963 to Bob and Audrey Smith in Houston, Texas. It was early in infancy that her parents began to question their pediatrician that something was wrong with Melissa.

At the age of 8 months Melissa was hospitalized and a new pediatrician diagnosed her with congenital familial dysautonomia. Melissa's doctor gave her father a medical reference book to read. The book had several columns of the documented information on the disorder that Melissa was diagnosed with.

Even though Bob and Audrey had little information, they were relieved to finally find out what was wrong with Melissa.

Melissa as a young girlMelissa as a young girl [click to enlarge]Congenital familial dysautonomia is a rare inherited disorder characterized by insensitivity to pain and an inability to sweat. Melissa needs to be cautious of exposure to extreme weather since she has no body temperature control.

"Melissa has no fear of anything, because she can't feel anything," said Audrey.

It was then recommended that Bob and Audrey institutionalize Melissa. This was the typical recommendation and practice at the time. Parents were not encouraged to keep their disabled children at home to raise. They were told that she had mental retardation, would go blind and deaf and be in a vegetative state. However, Melissa's parents decided not to institutionalize her, but roused her and taught her in their family home.

In 1964, Melissa and her parents were transferred to Philadelphia and a research doctor heard of Melissa and asked to do a study on her to find out more about her diagnosis. It was then that the correct diagnosis of congenital familial sensory neuropathy with anhidrosis was given.

Melissa learned to read, write and became quite educated. When Melissa was 18, she graduated from Topeka West High School and Bob and Audrey decided it was time to let Melissa grow and develop further independence away from their home. They heard about Sheltered Living, Inc. and from then on Melissa has lived in a home with assistance and support from SLI.

Bob and AudreyBob and Audrey [click to enlarge]Bob recalls that as parents it would have been more difficult for them to push Melissa to become more independent but with the support of SLI she was able to do that in a safe and secure environment.
With the help from SLI, Melissa was able to get a job on the production line at a book bindery company in Topeka. In order to get to work, Melissa had to ride a bus every day. This allowed Melissa the ability to be independent, which was a dream come true for her.

Melissa loved working and earning her own money. She was able to go on a cruise and pay for it with the money she earned working at the book bindery.

The services at SLI have allowed Bob and Audrey to be very involved in Melissa's life and to have the freedom of a normal parent/adult child relationship and the security of knowing their daughter is safe, happy and secure.

Lisa Jackson, president/CEO of SLI, said "Melissa has touched many people at SLI; her friends, staff and roommates. She is a very tender hearted, strong willed and determined woman. Bob and Audrey made a decision years ago, despite what the doctors recommended, based on their values and love for their daughter. We are so thankful they did."

"Melissa has taught me to value every single life and we couldn't be more proud of her," said Audrey.

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