Rachel "Bug" was born on May 21, 1999, weighing in at 3lbs 8oz & 17". She was 8 weeks early. It was discovered 5 days prior to her birth that her heart was full of tumors and we were told that she wouldn't live more than 3 or 4 days after birth. At one week old she started having Infantile Spasms and shortly there after was diagnosed with Tuberous Sclerosis. At 5 weeks old she went home, much to the doctors surprise. By age one the spasms were so intense that she was given medication to stop the seizures. It helped reduce the seizures but made her so groggy that she couldn't sit up any more.  |
| 1 year old...nice bruise! |
We then tried several other drugs- ATCH, Keppra, and Sabril. They all worked great for a short time,with Sabril being the best, then started loosing their effectiveness. In September of 2002 we went to the Children's Hospital in Detroit where Bug had brain surgery. The surgery was done in two stages. Those were two of the longest days... the first day 5 hours and the second, 9 hours. The surgery left her right side paralyzed. We had to shave off all her pretty hair after the surgery. We stayed in Detroit for almost four weeks. Bug was growing very despondent, she was use to being around her 9 siblings. She was flown to PCMC via a medical jet. She was very happy to see everyone the next morning. She spent 2 weeks in PCMC. After a week at home her kidneys shut down ( due to large doses of antibiotics) and she spent another 4 weeks in PICU, sedated and intubated.We almost lost her a second time. She was so frail when by this point that just moving her made her hurt. Bug had to learn to sit up and walk...again. We were so excited at Christmas time when she finally started to roll around.
Bug after surgery. Picture below before surgery- 3 yrs old.
After the surgery Bug went without medication and was seizure free for 2 years. The seizures slowly returned. In 2009 Bug had VNS Implant surgery. The VNS increased the seizures. It was turned off in 2010 and she started Sabril again. She still has myoclonic jerk seizures that are triggered by sound. Something as common as the noise made by a light switch can cause a seizure. Little everyday sounds that we don't notice. Bug is now 12. She doesn't talk but has her own way of letting us know what she wants. She loves everyone and everyone loves her.
It is our hope that a cure can be found. Please join with us in this and jump on
Bug's Bandwagon.
for more information on TSC go to http://tsalliance.org/
