#HoldenStrong

Holden Nikkolas-Paul Vigue was born on February 23, 2017 to Diana and Cody Vigue and at first appeared to be a healthy baby boy but within a few days began to have seizures.  His body weight dropped and he was not regulating his body temperature well on his own and also he was having a hard time keeping his blood sugar up.  Holden was sent to St. Vincent’s Hospital Pediatric Intensive Care Unit in Green Bay.  While there they did numerous tests including the EEG which showed that he was having two types of seizures, one that we could obviously see and one that he has while he is sleeping that we cannot see.  Two types of medication were tried, Keppra and Topamax and they did not seem to work.  After one week in the hospital he has been diagnosed with a very rare type of epilepsy and they are going to try a treatment called Acthar Gel.  They will have to give him injections daily and have twice a week doctor visits with a follow up EEG in a few months.  We are looking to help them with expenses related to travel and any possible unforeseen medical expenses such as co-payments or special equipment (The cost of one vial alone of the Acthar Gel is $27,000 and we do not yet know if it will be covered by insurance).  Diana would like to purchase an Owlet baby monitor suggested to her and agreed by her doctor that it would be a good tool for her to have for peace of mind.  We appreciate any help at this time to get them through this difficult time with their new tiny baby boy.