Hi, this is Sue Byrne and I’m here with my daughter in law, Gina and we are fundraising for our grandson/nephew, Grayson. As you all know Grayson hasn’t had an easy life since he was born. Grayson was rushed to the ER at just 3 days old due to some complications Heather noticed. Once Grayson was in the ER they tested his blood sugar and found that his blood glucose level was 14 when a baby shouldn’t have a level below 40. Grayson had many seizures that night and sadly stopped breathing that next morning. After being intubated he spent the next 16 days in the NICU while doctors from all over the country ran tests and eventually diagnosed Grayson with a rare disease; Congenital Hyperinsulinism. Being as rare as it is there aren’t many doctors who know about it and how to treat it and what can come from having CHI. In September of 2018, Grayson was cured of CHI from Children’s Hospital of Philadelphia. Fast forward to March 2019, Heather woke up to Grayson stiff as a board and barely breathing. Grayson was having a seizure and was later diagnosed with Epilepsy. Placed on one seizure medication (KEPPRA) and his body tolerated it well and he was seizure free until February of 2023 when his health started to go down hill. Since May Grayson has added two more medication (ONFI & VIMPAT). Grayson has spent 2 or more days in the hospital 7 out of the last 10 months; 2 stays being more than a week and has had 70+ seizures this year; 54 just in the month of September. Grayson’s been diagnosed with Cryptogenic localization-related epilepsy with ESES and we have also been told he has Refractory Epilepsy which means no medication is going to stop his seizures at this point. As of Wednesday last week Grayson was deemed a candidate for Epilepsy surgery. The first surgery will put him in the ICU for two days and then in the EMU (Epilepsy Monitoring Unit) for a minimum of 15 days. During that time Heather will not be able to work and will be at the hospital with Grayson the entire time. After the first procedure, Grayson will then go back for a second procedure where they will go in and actually remove the part of his brain that the seizures are coming from. This surgery will have a 90% decrease in Grayson's seizures which will allow him to live a normal childhood free of some doctors appointments. At this point we are unsure of the length of the hospital stays but we would like to make this a little easier on my grandson/nephew and Heather. We will be sharing updates here as well on Grayson's progress.

If you would like to help in other ways we have started an Amazon Wishlist as well for items to help during their hospital stay and when returning home. https://www.amazon.com/hz/wishlist/ls/1I14TIQZYFLFO?ref_=wl_share