On Christmas morning last year, Isabella, while opening presents, started having repetitive jerking movements and would stare off into space. Not understanding what was going on she thought she needed to eat something. About an hour later the movements stopped.
The following Tuesday she said she still felt a little jerky. We contacted the doctor who scheduled and emergency EEG. That ended up being the beginning of Isabella’s world changing. She had her EEG on Friday, December 30th. At 8am on Tuesday morning following a long holiday weekend, we received THE call. The Neurologist cleared her schedule and wanted to see us first thing the next morning. By noon on January 4th 2017 we found out that Isabella had Juvenile Myoclonic Epilepsy and that it was progressing.
The episode she had on Christmas morning was considered Status Epilepticus. Meaning, the seizure that doesn’t stop. Isabella had been diagnosed with ADHD at the age of 8 and over the last year her medication had been increased due to her struggles to focus. The neurologist explained that she most likely started having her first Absence Seizures at the age of 8.
Over the past year they were increasing and she was starting to have Myoclonic jerks. She had been falling more frequently, having dizzy spells, even losing consciousness in class. The Neurologist warned us that at some point in the near future she would probably have a Tonic Clonic (Grand Mal) seizure. We started Isabella on meds, had school services put in place, discussed issues with her dance teacher. We covered all the bases except preparing ourselves for the big one. On January 24th at 6:30 in the morning after she got in her father’s car to head to Wethersfield, it happened. Isabella had an approximately 45 second Tonic Clonic seizure. She was transported to CCMC where she stayed until 9:30 when she was back to her baseline.
Isabella is strong and will grow up to be a successful young lady. This is just a speedbump in the road. She cannot grow out of this and she will most likely be on medication the rest of her life. This will NOT stop her from being the amazing and caring young lady she is.
This has now become our norm and that is ok. We make sure that everyone who will be alone with her is aware of her seizures. School looks out for it. Her dance teachers watch out for her. We watch for everything to make sure she is getting everything she needs and we have put things in place to minimize her triggers. Unfortunately, we are still in the trial by error phase. Meds need to be tweaked, more tests need to be run. Meanwhile Isabella is just trying to be a 13 year old girl. She has relied heavily on the Epilepsy Foundation as a source of information. For that we ask that you help us to help them! The foundation also supports a kids camp for those with Epilepsy. There are many people in a worse situation than Isabella and your contributions can help to get them and us the resources to adjust to our new norm.
Thank You in advance for any contribution you can offer.
|Donated to||Donor Name||Donation Notes||Amount|
|Team||Liz and Lynn||Good luck today!!! Hopefully the rain will stay away for your walk :)||$65.00|
|Team||Laura Stenta||We'll be thinking about you tomorrow!!||$50.00|
|Team||Candace Clark||Good luck Bella! You Rock!!!||$20.00|
|Team||Claire Kapilow||Good luck team Izzy!||Undisclosed|
|Team||Franco and Kristine Sanzo||This Money donation is being given to Isabella for her team on behalf of Nonno, Nonna, Zia,Zio, Daniella, Anthony & Lisa with lots of ❤️ xoxo||$100.00|
|Team||Manuela Rodrigues||We hope this small donation can help you and others like you that are struggling. XOXO||$50.00|
|Team||Gene & Ro||Bella you rock!||$100.00|
|Team||Lorraine Dubowsky||You've got this Bella.||$25.00|
|Team||Bruce, Donna & Marissa McPhers||We love you Bella, stay strong. XOXOXO... Marissa, Bruce and Donna||$50.00|
|Team||Joe Roberts||Wishing you all the best Isabella!||$60.00|
|Name||Walk, Run, or Ride||Donations Received|
|Brown, Shawn (2)||Walk||$0.00|
|Madeira, Christina (2)||Walk||$0.00|
|mollica, camella (4)||Walk||$0.00|
|Paine, Erica (2)||Walk||$0.00|