DIFFICULT TIME
Baby, family face incurable disease
By Kacy A. Watts
THE DAILY IBERIAN
Looking at Matthew (last name) one would never guess the beautiful, 15-month-old New Iberia baby with sandy brown hair and expressive eyes has tumors in his brain and heart.
Matthew suffers from Tuberous Sclerosis, a little known disease that has, for some reason, infected his tiny body.
Between watching his favorite television show "Blues Clues" with his 3-year-old brother Aaron and playing at his friend's house, Matthew squeezes in doctor's appointments and physical therapy sessions, never realizing that he will have to deal with a disease for the rest of his life.
According to the Tuberous Sclerosis Alliance, "Tuberous Sclerosis (TS) is a genetic condition commonly characterized by seizures and tumor growth in vital organs such as the heart, kidney, lungs and skin." The tumors formed as a result of TS are not cancerous, but are the cause of many problems. Tumors in the brain could lead to seizures, changes in behavior, headaches or could block the flow of spinal fluid.
The alliance also explained the disorder affects some people with TS severely, while others are so mildly affected it often goes unnoticed. In sever cases, some experience developmental delays, mental retardation or autism. On the other hand, many people with TS live independent lives, and some have entered the challenging fields of medicine, law and research.
The condition plagues more than 1 million people world-wide and is transmitted either through genetic inheritance or as a spontaneous genetic mutation.
Despite the challenges the disease forces its carrier to endure, the majority of the people with TS have a normal life span. Tumors that interfere with an organ's normal activities can be removed and physical therapy can help with developmental delays, but there is no cure for TS.
Matthew is the son of Julie and Ronald (our last name). Julie, 28, is a stay-at-home mom with a degree in Animal Science from UL Lafayette. Ronald, 30, is administrative assistant at Specialty Rental Tools, in Broussard. The couple has been married for eight years.
Julie first became aware that something was wrong with Matthew because he seemed to behind in developing his motor skills. She said most doctors she confronted simply told her he would catch up. Finally a woman who worked at the boys' former day care noticed some of the same problems.
She recommended Matthew enroll in the Child Net Program, which got Matthew involved in physical therapy. Child Net, a school board program, was responsible for discovering Matthew had a problem hearing. Julie realized this could be why her son seemed so unresponsive. Julie said PE tubes put in Matthew's ears finally allowed him to sit up and and become interested the world around him.
Julie's concerns of her child's delays eventually lead Matthew's doctor to perform the baby's first CAT Scan. It was then that Matthew's calcified lesions, or tumors, in his brain were discovered. Soon white spots on Matthew's skin were tied in with his brain tumors and the possibility of TS became greater. On April 16, Matthew started having seizures. Matthew's seizures are being controlled with medication.
Not long after her baby's seizures surfaced, an echo cardiogram of Matthew's heart raised suspicions of tumors.
An entry Julie submitted to the "The Daily Iberian" from her journal reveals a small part of what she goes through every day.
The following entry was written a few days after the echo cardiogram first acknowledged tumors in Matthew's heart.
"It is so incredibly hard to think that such a little guy who is only learning of the world around him and learning to explore it can be going through such a difficult time. I cry every time those images come to mind of him in a seizure. I cry thinking that I am gonna have to give him this medicine every day twice a day. I cry that he has tumors in his beautiful little heart that is so full of love. I cry because how could I not want another beautiful smile to light up my life and yet, be so scared that another smile only would cover up what other's don't see, TSC. I cry because I know that we will be OK!! I know that God made him special--beautiful smile, loving personality, friendly yet shy, inquisitive. He is so perfect and I wouldn't trade one single precious moment."
Not long after that entry, Matthew had an MRI of his heart that confirmed the suspected tumors.
"I struggled to keep my composure. Here I am staring at these 'things' that reside in my baby's heart. My eyes began to tear as I thought to myself. I struggled to listen to the doctor's words as she explained to me our future plans for these tumors. I just couldn't concentrate on her voice. I finally looked at Matthew laying there so still and looked at his beautiful round face. I remember thinking that we have to live with this and not let it live our lives for us!"
Julie said she is determined to educate people about the disease that has entered her life and the life of her child. She is currently involved in a letter-writing campaign called "Stamp Out Tuberous Sclerosis." She said the campaign is to raise funds to research the disease, but said she uses it for educational purposes.
"I think we were pretty fortunate actually. Life gave us a very special little boy. I will not let him grow up in a world that doesn't know what he has to live with for the rest of his life. I will tell anyone who will listen to my voice or read my letters about Tuberous Sclerosis. My goal is to make it easier for the next family who will be given the diagnosis of TSC. I don't want them to feel alone in their battle. Hopefully, more people will have a little general knowledge on this rare genetic disorder," Julie wrote.
For more information on "Stamp Out Tuberous Sclerosis" or the disease itself, e-mail Julie at tsc_awareness@hotmail.com.
