‘Help Baby Lliam an Epilepsy Superhero’ Raising Funds for Oil City Infant

| November 8, 2018

OIL CITY, Pa. (EYT) – Funds are being raised for a young Oil City couple and their four-month-old son, Lliam, who has been diagnosed with epilepsy.

Lliam has been diagnosed with Intractable Epilepsy, Infantile Epileptic Encephalopathy, and KNTC1 gene mutation.

Lliam Millard was born on July 2, 2018, to Devon and Lynzi Millard, of Oil City. Although he was two weeks early, he appeared to be healthy. However, approximately two weeks after Lliam was born, his parents began noticing some twitching that concerned them. They immediately called his pediatrician and had him evaluated.

According to Lliam’s grandmother, Lliam’s pediatrician believed the twitches were normal and that Lliam would outgrow them. However, the twitching continued to get worse over the next few weeks.

On August 25th, at just eight weeks old, Lliam’s twitches had become so much worse, so his parents decided to take him directly to Pittsburgh Children’s Hospital Emergency Room where he was admitted. While he was at Children’s Hospital, he continued to have multiple seizures on a daily basis which did not seem to respond to medication.

Lliam underwent many tests, from MRIs and CT scans to a lumbar puncture and genetic testing. All of the tests came back clear, except for his genetic testing.

Eventually, his pediatric neurology team diagnosed him with Intractable Epilepsy, Infantile Epileptic Encephalopathy, and KNTC1 gene mutation.

Intractable Epilepsy is a form of epilepsy that does not respond well to medication and Infantile Epileptic Encephalopathy is a severe form of age-related epileptic brain disease which begins within the first three months of life. The KNTC1 gene mutation is even rarer.

“Lliam was the first case they’ve ever seen in Pittsburgh Children’s hospital,” Millard said.

With his current diagnosis, Lliam is currently on four seizure medications, a G-Tube, and the ketogenic diet. His family also has to closely monitor his growth and weight because the gene mutation could cause a delay in growth or other possible developmental delays.

“They have to really start watching him now as he’s four months old and this is when they starting noticing the major effects of the disease. He could possibly never talk or walk or even eat by mouth.”

Lliam is currently receiving in-home physical therapy, but his family still has to travel to Children’s Hospital in Pittsburgh to see his pediatrician, neurologist, and dietitian at least once every two weeks, sometimes as often as two or three days in the same week.

The constant care the Lliam requires, plus the in-home therapy, and the constant trips to Pittsburgh have created a challenging situation for the young couple. Lynzi is currently a student at Oil City High School, while Devon is currently seeking a job to support his family that can offer the kind of flexibility he requires due to his son’s special needs.

While traveling and living expenses are stressful enough for a young family with an infant struggling through health issues, they are also struggling over concerns that the majority of Lliam’s medical and nutritional needs may not be covered by insurance.

Facebook Page Developed

In order to help the young family, Devon’s mother, Lisa Millard, organized the Facebook Page “Help Baby Lliam an Epilepsy Superhero”. From there, she began reaching out to share Lliam’s story and to organize fundraisers to help the young family with all of their current needs.

Barbecue Benefit Dinner Planned, November 17

The first event being held is a Barbeque Benefit Dinner in Lliam’s honor scheduled for Saturday, November 17, at the Franklin Elk’s Lodge, located at 1309 Buffalo Street in Franklin. The event will open at 4:00 p.m. and runs until 8:00 p.m. Tickets are $10.00 for ages 12-59 or $7.00 for children 11 and under and senior citizens 60 and over. Ages four and under are free.

The event also includes a Chinese auction and musical entertainment provided to RC Double Take. It is a family event, so alcohol will not be provided. Takeouts will also be available.

Tickets are available through the “Help Baby Lliam an Epilepsy Superhero” Facebook page or at the door on the evening of the event.

There are also “Team Lliam” t-shirts available for purchase through the Facebook page.

“Help Baby Lliam, an Epilepsy Superhero” GoFundMe Page

For anyone who wishes to help the family, but is unable to attend the benefit, there is also a “Baby Lliam Epilepsy Superhero” Fundraiser through GoFundMe.com, as well as a “Help Baby Lliam an Epilepsy Superhero” account where funds can be donated at the either the Oil City or the Franklin branches of the Franklin Oil Region Credit Union.

These are just the first of the fundraisers planned for the Millard family.

According to Lisa Millard, Lliam’s road ahead currently a fog of unknown medical procedures and expenses.

“This isn’t something that can be ‘cured’, but hopefully it will be managed. In order for that to happen, it’s going to be a long and expensive journey,” she noted.

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Category: Community, Local News, News