Donate to Byron's Medical and Caregiving Needs

UPDATE 2/4/25 from his mom Hollie

I wanted to wait until I had a bit more info before I updated. Byron is definitely getting a little stronger. They did take out the breathing tube and have made note that in the future he is not to be intubated or heavily sedated. He just is not a good candidate and honestly unless it's a last resort it will overtime compromise the few things he can do independently, such as eating and drinking, by weakening the muscles.

We have a long road ahead to get these seizures under some control. Hes been amazing and sooooooo strong. I couldn't be prouder of him.

I end this with the biggest THANK YOU I can muster. Your generosity and help is beyond appreciated. These are very scary waters and you have made them feel a little less scary and the love you have sent through messages and kind words and prayers.......i could go on and on. Please keep your thoughts and prayers coming. Reading your comments and words of wisdom and favorite scriptures are some of our favorite moments.

We love you. He will need to keep the NG tube for a bit until he can eat on his own for meds, but that ugly vent is gone. Thank you Jesus!!!! He's very tired...poor baby.

Hello everyone, meet Byron. Byron is my 28 year old nephew, who has been struggling over the last 10 months to sustain his quality of life. Byron was born with Linear Sebaceous Syndrome ( a rare, genetic disorder characterized by a distinctive linear pattern of skin lesions, along with neurological abnormalities such as seizures, developmental delays and skeletal defects). He has also been diagnosed with Lennox Gestaut Syndrome (a complex, rare and severe form of epilepsy that is characterized by multiple and concurrent seizure types).

Up until last year, Byron was medically stable. His seizures were controlled with medication and despite being disabled, he lived a fairly normal life, including going to a day program, which he loved. His seizure activity was initially thought to be brought on

by pneumonia, viruses, bacteria and anything else of the sort; but in most recent months, Byron's seizures have been more active, continuous and relentless. He has had to be intubated twice, he's been in the ICU with a versed drips, round the clock medication and his EEGs are still registering non stop seizures.

In May of 2024, Byron was hospitalized with pneumonia and he has been on a steady decline ever since. My sister, who is his full time care giver, has been by his side relentlessly. He has been hospitalized almost monthly since May of 2024. Some are short stays, but many are extended admissions.

During these stays, my sister is not being paid as his caregiver (after 30 days- which has long been passed). At the advice of Byron's medical team, my sister decided to put Byron in a skilled nursing facility. They failed to provide proper medical care and Byron became critical within 48 hours and was rushed from the facility via ambulance due to uncontrollable seizure activity. The Ohio Department of Health did a full investigation on this facility and they were found guilty of neglect. With that being said- outside care for Byron is NOT an option. My sister has raised and cared for Byron for 28 years and this facility couldn't even care for him for 48 hours.

Byron is in the process of getting a Vagus Nerve Stimulation (VNS) to see if this may help control his seizures a little better. He also has received a referral to the Cleveland Clinic for a 2 week study.

The last 10 months have been the most trying time for my sister and her entire family. From medical expenses to loss of income, I cannot even fathom that stress on top of everything else they are dealing with.

Please consider a small donation to help my sister be able to be able to stay by Byron's side and advocate for him. This will also allow my brother in law to continue working as much as possible and use less FMLA. This entire family has been through so much, I'm just trying to help alleviate the financial burden they're under.