A Personal Story

(updated November 2005)

My name is Lisa Pleasants-Smith and I helped to create this Web site in 2000.

My second child—Jaimeson—was born on February 17, 1998 in Gainesville, Florida. Much to the surprise of all involved, she was born with Treacher Collins Syndrome (TCS)—a genetic, craniofacial condition, that may occur spontaneously.

Jaimeson required the placement of a tracheostomy tube when she was three days old. Essentially, she was born without outer and middle ears, cheek bones, temporomandibular joints, and the posterior portion of her lower jaw. Jaimeson is a beautiful, bright and happy little girl. She has taught us so much about what is really important in life, and she deeply touches the lives of those with whom she comes into contact.

In January 2000, I found an unexpected opportunity to adopt a very special little boy, who was born with Goldenhar Syndrome/Craniofacial Microsomia—a craniofacial syndrome similar to that of Jaimeson's. Anderson joined our family when he was a newborn. Anderson was, and still is, tracheostomy-tube and gastrostomy-tube dependent.

Both Jaimeson and Anderson have a terrific big sister, named McLaine. Today, all three of our children continue to be happy, healthy, and very social individuals. They each have their own special gifts. They continue to teach us so much about love, acceptance, and perseverance.

Information is very powerful in helping our family cope with the ongoing challenges of raising our children. Because of this, the Internet became very important to us. We have been able to find solutions and gain a sense of peaceI around the daily challenges, by sharing experiences with others who are facing similar challenges. We have found that coping involves continuous self-education through research and networking.

Children with facial differences often experience a multitude of challenges throughout their lives. Our family is faced with medical issues that include multiple surgeries and interventions for problems including breathing, feeding, hearing, and communication.

We also deal with challenges in special education and in health insurance coverage, not to mention ongoing psychological and social issues.

We have experienced the many stresses and joys that many other families face when raising a child with special needs. It is a constant learning experience.

Today, Anderson is almost six years old. Jaimeson is nearly eight years old. And McLaine is ten years old.

I have much gratitude for my devoted family and friends, who continue to provide limitless love and support, and for the expertise and genuine caring of special doctors, nurses, therapists, and teachers.

I dream of a world that is not merely tolerant. Rather, I dream of a society that is truly accepting of all individuals, regardless of their differences. If this Web site can make even the smallest contribution toward facilitating this dream, then it has served its purpose.

Your questions and feedback are very welcome.

Update on the Kids

(November 2005)

Jaimeson
Jaimeson is almost eight years old. She had her cleft palate repaired at 13 months of age. She's had one jaw reconstruction surgery, two jaw distractions surgeries, and she was successfully decannulated (the trach removed), twice, in 2001 and again in 2004. Jaimeson is gastrostomy-tube dependent and she wears a bone conduction hearing aid. We are looking forward to her receiving a bone-anchored hearing aid (BAHA) in the near future.

She is in a mainstream/Total Communication first-grade class, with an ASL interpreter in the classroom. Jaimeson aspires to become a veterinarian when she grows up!

Anderson
Anderson is almost six years old. He has experienced one jaw reconstruction surgery, and two jaw distraction surgeries. He is tracheostomy- and gastrostomy-tube dependent. He wears a bone conduction hearing aid and is unable to speak.

He communicates beautifully and vigorously, using American Sign Language and his Dynamyte (a "talking" assisstive device). Andy is in a Total Communication (speech and ASL) Kindergarten Class. At the moment, he is very fond of Batman, Spiderman, and the Teen Titans.