Support Lydia's Journey to Thrive

Hi, I’m Tori and this is the story and journey of Lydia. We really didn’t want to have to do this, but we have been struggling really hard to cover all of Lydia’s medical expenses on top of me taking leave of absences pretty much since she was born.

So, Lydia is 11 months old and has Aicardi syndrome, which is a rare neurological disorder that causes seizures and infantile spasms. To start off, we found out around 36 weeks that something was wrong with Lydia. They had found something on an ultrasound in her brain. But since I was so far along, we had to wait until birth to get an MRI. When we got an MRI when she was born, they found she had a large arachnoid cyst in her brain. We followed up with Pittsburgh, and they said she could have developmental delays and possible seizures.

Fast forward to February, we were receiving early interventions to help her stay on track with milestones. One day, Lydia started making these weird jerking movements like she was doing a sit-up. We sent off a video to her neurologist, who told us to head down to Pittsburgh because she was pretty sure Lydia was having seizures. We had a bunch of testing and stuff done when we were in Pittsburgh and found out that her brain hadn’t fully developed at birth and she was having infantile spasms. We started meds to try and help them, but Lydia didn’t respond like they had hoped. After testing and several specialists, they finally agreed she has Aicardi syndrome, which affects girls and has less than 1,000 cases in the US.

Some of the things that have happened with Lydia are that she is severely delayed and can’t support her head. We do PT three times a week, OT once a week, and vision therapy once a month. At another hospital stay when we started the keto diet, she had a swallow study done and found she was aspirating into her lungs, so we had a G-tube placed. This has taken a large toll on our family, and we are struggling to buy diapers, clothes, and all the special things Lydia needs. On top of this, we are really struggling to pay our bills since I have to decrease my hours at work and also take a pay cut. Even if you can’t help us out, sharing our story can make all the difference in the world.