About Amaan

basis. With your prayers and support, we hope Amaan’s progress continues this year. We hope to see all of you at the Annual TS Walk on Saturday, May 14th 2011 at Frisco Commons Park. Registration starts at 10am and walk starts at 11am.

Amaan Panjwani was born on October 20, 2004. He was a full-term healthy baby boy. I can still remember that day. At 3:15 am, my wife, Zohra started having regular and frequent contractions. We grabbed her bags and called Amaan’s aunt, Farzana, over to the house to watch his older brother, Ishaan. We called the physician on the way to the hospital and she made sure there was a room ready for us. Amaan’s other aunt, Ezmina, met us at the hospital. Four hours later, at around 7:15 am, I was holding my wife’s hand as she was actively in labor. Next thing you know, my cell phone rings, it’s my parents on the other line informing me that they had just gotten into a car accident. Unlike his brother, Ishaan, who took almost 48 hours to come into this world, Amaan was born in 4 hours. This is very characteristic of Amaan. He does everything quick, unlike Ishaan. Even today, Ishaan will sit in the bathroom for 30 minutes to go potty and Amaan will run in, poop, pull his pants back up, and run back to watch TV, all in 30 seconds. Let me fast forward this story. At the age of three months, Amaan developed ash leaf like spots all over his body. His pediatrician sent us to a dermatologist who took one look at the spots and knew exactly what it was, although he hoped he was wrong. He got a thick medical book out and showed us the diagnostic characteristics for Tuberous Sclerosis Complex (TSC). I remember he told us not to go home and read about TSC online and that’s exactly what we did. When we read about this horrific disease, Zohra and I could not stop crying for hours. The dermatologist had directed us to a geneticist to confirm the finding and also requested an MRI. From there, we were directed to a pediatric ophthalmologist, who confirmed that he had an eye marker in his left eye, indicative of TSC. We still didn’t have a conclusive diagnosis and were growing more concerned by the day because the spots continued to multiply.

In March of 2005 we had an MRI done at Children’s Medical Center in Dallas, the results of which confirmed that he had tumors in the brain conclusive of TSC. As if the pediatrician, ophthalmologist, geneticist, cardiologist, and the dermatologist were not enough doctors for him, we were then directed to the Tuberous Sclerosis Clinic at Scottish Rite Hospital to meet his future neurologist. By this time, Amaan started to have seizures, which presented as head drops. Imagine being sleepy and watching TV, and all of a sudden your head drops, you startle yourself, and you wake up and lift your head up again. This is the description of what Amaan’s seizures looked like. From the head drops, his seizures developed into staring spells. The neurologist recommended a video EEG.

On July 23, 2005, we checked into Medical City Dallas hospital, attached 30 wires all over Amaan’s head and body, and confined our nine month old to a small crib. This was a grueling experience. We had moved into the hospital for the whole weekend with all our toys, food, and clothes. To keep our spirits up we joked that we were on a medical vacation. On Sunday afternoon Amaan had his seizures which were captured on video. As a result he was prescribed medication that was not available in the US. I found a pharmacy in Canada that shipped us the medication which completely stopped his seizures for some time. Over the years Amaan has been on multiple seizure medications, however for the past three years he has been completely seizure-free without any medications.

It has been a very long and stressful journey for us but our families have been there every step of the way to lift our spirits. Over the years, our family and extended family have been involved with many events related to the local DFW TS Alliance. These events include the TS camp, the annual TS picnic, annual holiday party held at the Scottish Rite Hospital in Dallas, and the TS Walk.

We attended our first walk in 2006 and were amazed and inspired by the passion and dedication that other parents had for spreading awareness of TSC in the community. Since then, we have participated every year to raise funds and create awareness. This will be our fifth year that we have been involved with the TS Walk and to date we have helped raise $40,000. Our goal this year is to raise $15,000. Please help us find a cure by supporting Step Forward to Cure TSC Walk held at the Frisco Commons Park in Frisco, TX on May 15, 2010.

Step Forward to Cure TSC® is the TS Alliance's largest national fundraising event, organized by local volunteers and families who are affected by tuberous sclerosis complex (TSC) in more than 30 communities across the United States. This successful grassroots fundraising effort not only generates vital funds for TSC research but also raises awareness about TSC and the need for increased research funding to combat this complex disorder. For more information, please visit www.tsalliance.org.