As some of you know - but many of you don’t - my nephew Owen has been battling epilepsy since early 2018. At 18 months old he became ill and had a massive seizure. He was rushed to the ER where he experienced another seizure and slipped into a coma. He then spent two weeks fighting for his life in the PICU where he was experiencing seizures multiple times an hour. Doctors told us that if the seizures were not able to be controlled he would likely not survive.

Owen, however, fully embodies the meaning of his name (which means “young warrior”). At 18 months old he fought to stay alive, fought through the fear and pain of multiple spinal taps, MRIs, CT scans and continuous EEGs.

While he survived that and is now an 8 year old sweet, silly, energetic boy - he has never been seizure free, despite the nine different medications he has been prescribed over the years. He cannot spend much time outside playing in the summer as the heat can trigger seizures. He has been through speech therapy and occupational therapy and suffers from learning disabilities as a result of his epilepsy.

Despite all of the testing, there seemed to be no answers. However, my sister was referred to the Children’s Hospital of Philadelphia where Owen has been seen by an incredible team of neurologists to include neuro genetic specialists and neurosurgeons. While there is no cure for Owen’s epilepsy, his medical team believes that they can help him gain control of his seizures and take back some of his little boy life! He will be having a vagus nerve stimulus or placed at the end of the month to help him find a better quality of life.

However, this is a VERY costly procedure (over $200k) and my sister’s insurance will definitely not be covering all of the expenses. In addition, she is frequently traveling from Virginia Beach to Philadelphia for appointments as well as for his surgery, which is also costly.

If you have made it this far in your reading - thank you for sticking with me! Anything you can do to help our tiny warrior would be so amazingly appreciated!