Paul and Gladys Stefany
Very Proud Parents of Jessica Grace Stefany (Age 4 ½)
403 Leisure Loop
Milford, Pennsylvania 18337
(717) 296-6688

April 23, 1998

Dear Members of the Pennsylvania Liquor Control Board,

I am Jessica Grace Stefany and I am 4 ½ years old. I was born in Stroudsburg, Pennsylvania on December 6, 1993. They really weren't expecting me because my birth mother didn't know she was pregnant until she went into labor. They think I was 2 to 3 months early. Now, I make everyone late all the time so I guess it evens out!!!

I was born an alcoholic. The minute they cut my umbilical cord I went right into the "DT's". I only weighed three pounds and also had seizures so they put me on a big helicopter and took me to the "NICU" at St. Luke's Hospital in Bethlehem. When my blood tests all got done they found out that, if I was old enough to drive, I had enough alcohol in my system to get me arrested. The doctors there said I have Fetal Alcohol Syndrome.

I stayed at St. Luke's until I was six weeks old. That's when I met my "Mommy", "Daddy", big sister and big brother. They were really my foster parents, at the time, but, I didn't know that. They came to the hospital to pick me up and the nurse said I was the "most irritable" baby they had ever had there!!! Can you imagine that?!?!? If she was going through withdrawal, seizures, digestive problems, sensory problems and had to have the lights on 24 hours a day with all that noise, she'd be irritable too!

Anyway, when I was 6 weeks old and weighed 4.5 pounds, they decided to let me go home with Mommy and Daddy because I wasn't doing very well in the hospital and they thought Mommy and Daddy's house might be the best place for me.

Mommy and Doctor Melzer played "musical formulas" and finally helped my digestive system to improve a little. The hospital told Mommy and Daddy that I was done having seizures and took away my Phenobarbital so were Mom and Dad ever shocked when, after 1 week with them, I had a "Grand Mal" and ended up in the hospital and back on the medicine!

When Mommy and Daddy picked me up at the hospital, the doctors told them I would probably be severely retarded. Mommy held me, got very angry at my birth mother and cried. Someone told her she should read "The Broken Cord". She did. She held me, got angry at my birthmother and cried. Mommy and Daddy prayed. They decided not to assume that I would be severely retarded, but, to work real hard with me so I wouldn't be. Every time I learned something new, they held me, forgave my birth mother, and cried. Some nice ladies from Easter Seals worked very hard with me. I began to get slowly better. Mommy and Daddy held me, forgave my birth mother, and cried.

For the first 8 months I was home, I never slept more than 1 hour at a time and never ate more than 1 or 2 oz. at a time. I cried a lot! Mommy and Daddy swaddled me very tightly, held me, got angry at my birth mother, cried and walked around like zombies! When I was 8 months old, I started to sleep for 2 hours at a time and finally weighed 8 pounds. Mommy and Daddy were so excited! Then, Dr. Lilik weaned me off the seizure medicine and I didn't sleep more than 30 minutes straight for two weeks. Guess what! Mommy and Daddy held me, got angry at my birth mother and cried.

In my tenth month, I had a seizure during OT. This time the doctor put me on Tegretol. Guess what Mommy did! Right!!! All this time, I was also on an apnea monitor, constantly sick, enjoying a major dose of the chicken pox, diagnosed with asthma, and being late (to make up for arriving early) at everything. I rolled over, crawled, sat up, babbled, walked, drank from a cup, fed myself, and talked late. (I'm still working on dressing myself and the good ol' potty!)

For Christmas, I gave my parents 4 hours sleep in a row, in my crib instead of in a baby carrier on their chests in the recliner. They looked unbelievably rested! For New Year's, I gave them a week keeping me company in the hospital with RSV (a respiratory virus that put me in respiratory distress in an oxygen tent).

However, all through this time, I continued to grow and learn. I worked hard. My therapists and teachers worked hard. Mommy and Daddy worked hard, held me, got angry at my birth mother, forgave my birth mother, felt sorry for my birth mother, tried to help my birth mother, cried, and prayed.

When I was 2 ½ years old, we all got adopted! Boy, was everybody happy that day! No crying! I'm doing a lot better, but I still need an awful lot of help. I still have PT, OT, Speech and go to an EI center. The government pays for all that. I've been going since I was 10 weeks old and will probably have to keep going for a very, very long time. Mommy and Daddy are learning as much as they can about FAS and are talking to all kinds of people to try to stop it from happening to anyone else and to help grownups learn how to help and understanding kids like me a little better.

I am a little healthier than I used to be, but still take seizure medicine. I get frustrated easily and can't calm myself down very well. I also can't generalize information that is in my mind and I have trouble remembering things. I am usually very happy and Mommy thinks I'm funny. She says FAS stands for "Funny and Sweet". Mommy and Daddy don't get angry at my birth mother anymore because they have learned more about alcoholism and understand that many people get hooked because they figure "It's legal! How dangerous can it be?" Mommy still cries when she sees me with other kids my age and realizes what has been taken from me and that her dreams for me will be very different from the dreams she has for my brother and sister. She also cries with frustration and exhaustion because nobody seems to want to help me unless Mommy fights them first. That's not fair because your laws say I can have the help I need, but nobody wants to give it to me because they don't recognize FAS.

I know that I am more loved and wanted than any child on earth. I know that God created me for a special purpose with a special job to do and we are all working very hard to make sure that I can do that job and that I can have a very happy life.

Jessica Grace Stefany (As written by my Mommy)

Ladies and Gentlemen:

As we approach this Mother's day, we are very mindful of the fact that Jessica's mother will not live to see another one. She is in the final stages of a terminal disease brought on by the consumption of a legal (often sold in State stores) substance that has destroyed and will take her life, severely and negatively altered the lives of her children, completely altered the future of our family, and will cost the government well over $3 million dollars in services both to herself and her alcohol affected daughters.

We are writing to you on behalf of our precious daughter Jessica (picture attached) and all of the thousands of American children born with Fetal Alcohol Syndrome (FAS) or Fetal Alcohol Effect (FAE). FAS is a cluster of birth defects that develop in infants born to women who consume alcohol during their pregnancy. It is the leading cause of Mental Retardation in the United States and is 100% preventable. FAS costs American taxpayers an average of $1.5 million per child (over the course of a lifetime) and *$321 million dollars overall, annually. (*This is a very low estimate, because many, many cases of FAS/FAE go undiagnosed or misdiagnosed each year.) According to what we have read, approximately 70% of these children will have some level of involvement with the judicial system and 60% of the mothers end up dead within 10 years of giving birth to their alcohol effected babies. You would think that figures such as these would cause a huge, righteous outcry from our leaders and, yet, there is silence.

FAS is an umbrella under which a host of diagnoses dwell. Jessica's list (to date) looks like this:

Fetal Alcohol Syndrome
Asthma
Partial Complex Seizure Disorder
Developmental Speech and Language Disorder
Developmental Delay
Height and Weight Deficiencies
Intention Tremor
Tight Hamstrings
Cognitive Perseveration
Echolalia
Autistic Traits
Rigidity
Sleep Disorder
Developmental Coordination Disorder
Adaptive Esotropia
Probable ADD/ADHD (Can't diagnose now because the seizure medication may be masking it)
Probable Central Auditory Processing Disorder (we're waiting for an appointment for the test)
Probably Diagnosis of Mental Retardation

The prognosis for her future may include some of these typical FAS characteristics:

Precocious Puberty (Along with the health and hormonal problems which accompany it.)
Social Problems
Behavioral Problems
Dyslexia
Dental Abnormalities
Extreme Impulsiveness
Poor Judgement
Little or No Capacity for Moral Judgement or Interpersonal Empathy
Sociopathic Behavior

I am begging you on behalf of our children, present and future, to take a very public stand on this issue. Please help us to call attention to the effect alcohol has on the unborn. Please help us to make mothers aware that consuming alcohol may harm their baby. Please help us to educate our doctors, educators, judicial professionals, and mental health personnel so that they will be able to diagnose and treat this disorder properly and please help those families currently struggling under the weight of this disability to obtain the services that are available to them and to develop services that should be available to them.

FAS IS 100% PERMANENT AND 100% PREVENTABLE!!!

PLEASE HELP US GET THE WORD OUT AND PREVENT THIS TRAGEDY FROM AFFECTING ANY MORE FAMILIES!

Most sincerely,

Paul and Gladys Stefany (Jessica's Mom and Dad)