Help Baby Liam Fight Against GNAI1 Neurodevelopment Disorder

Hi friends,

We wanted to share that we’ve moved everything over to a SupportNow Registry. This platform allows us to share updates more personally and consistently, and most importantly—more of what’s given goes directly toward supporting our son and what he needs.

That matters deeply to us. Thank you for walking this road with us.

You can follow along and support us here:

https://www.supportnow.org/liam-slattery

I wanted to create this gofundme on behalf of a very special little boy I know. I asked his parents to provide the details. This is their story...

Liam Patrick Slattery was born on May 20, 2024. When deciding on a name, Liam was selected because Dad wanted an all Irish name just like his parents named him. Liam means strong willed warrior/ protector. Little did we know how strong a warrior he was going to be. He came into this world healthy and excited to meet his two big sisters. As we were leaving the hospital to take Liam home, his nurse stopped by one more time to say goodbye and noticed his lips were blue. She called pediatrics and they ordered a cardio echo. When the tech came in to perform the echo, Liam stopped breathing. Mom ran out to the hallway screaming for help and the tech hit the code blue button on the wall. When Mom saw all the doctors storm the room she fell to her knees and broke into tears in fear for her son's life. That nurse was Liam's angel. Had she not stopped by one last time Liam would have stopped breathing in the car on the way home. This sent Liam to the NICU (Neonatal Intensive Care Unit) where it was confirmed he was having apneic seizures. At that point in time he was given a strong anti seizure medication that caused heavy sedation. Due to the sedation, he began to take shallow breaths and needed respiratory support. Over the next three weeks our little boy went through numerous tests and imaging. Eventually he was weened off breathing support and we focused on feeding and breathing on his own. After three weeks, the doctors could not find a cause for the apneic seizures after birth. They told us it was most likely trauma related to delivery and sent us home.

After three months of no issues, we were on a family vacation when disaster struck. On August 26th, we were in Charleston, SC and Liam stopped breathing again. We took videos and sent it to our care team back home in Michigan. By the time they were able to review what we sent, he had stopped breathing over 10 times. We immediately rushed to the children's hospital where he had another 15 confirmed apneic seizures. Our entire family spent three days in the PICU (Pediatric Intensive Care Unit). It was at this time that Liam was diagnosed with epilepsy. Additional labs and imaging were conducted with no conclusive evidence as to what was causing his seizures. We were released from the hospital with twice daily anti seizure medication (ASM) and were provided emergency rescue medications in case of a seizure onset on the 13 hour drive home to Michigan. The neurologist informed us that when it comes to epilepsy every case is different and the ASM's are entirely trial and error. There was a good possibility that they would not get it right on the first attempt.

Two and a half weeks went by on Liam's new ASM. On the morning of Sept 11th, at 9:10 am he stopped breathing when Mom was home alone with him. 911 was called and first responders arrived at the house. We reached out to his neurologist and increased his ASM dose. We agreed, if he had another seizure we would have to go to the emergency room. At 5:10 PM Liam stopped breathing and we took Liam to the hospital. Upon arriving he started to seize every 15-25 minutes from 8 pm to 10 pm. He had a total of 10 seizures on this day. After three more days in the PICU the doctors added a second ASM to his daily regimen and still could not find a cause. It was at this time it was suggested to do genetic testing. We wanted to help our son in any way possible so we decided to do a full genome sequencing.

On Sept 18th, just before Liam turned four months old, our family got the results from genetics and it was the worst news we had ever received. Liam has a rare genetic mutation called GNAI1 Related Neurodevelopmental Disorder. Symptoms of this mutation include, developmental delays, intellectual disabilities, neurobehavioral/ psychiatric manifestations, hypotonia, and epilepsy. In the available literature regarding GNAI1 (link posted below), there are only 26 known individuals with this mutation.

https://www.ncbi.nlm.nih.gov/books/NBK605493/

Since receiving this news, our family has been very proactive and are seeking all the possible treatments to provide Liam with the best life possible. Liam is now six months old and we have seen some delays in reaching developmental milestones. We have him in physical therapy, occupational therapy, cranial sacral therapy, and have found pediatric intensive physical therapy camps to help him in his journey. Not all of these therapies are covered under insurance and we have a long journey ahead of us. Over time we will find out how serious Liam's mutation will affect his overall quality of life. This gofundme was created to assist with all the costs associated with seeking the best medical treatments for our son.

We are quickly realizing to appreciate the small victories, all of the smiles, and special moments he brings to our family. We will never give up, we will never stop fighting for him.

Thank you to everyone who has supported us this far and in the future. We cannot do this alone and we are blessed to have unwavering support.

#HelpBabyLiam

UPDATE (5/21/25)

It has been about 6 months since this page was created and we wanted to provide an update to everyone who has contributed to Liam in the past or to those who are reading about Liam's journey for the first time.

The day after Christmas, December 26, 2024, Liam was admitted into the PICU at Mott. Liam had been sick for weeks leading up to this day. Mom was taking Liam to the pediatrician 1-2x a week asking them to listen to his lungs, their response on repeat was this is an upper respiratory infection and this season it is taking longer to get over it. The day after Christmas, Liam sounded different and his work of breathing was much heavier. Dad put our pulse ox on him and Liam was stating in the 60-70% oxygen range. When we arrived at the hospital, they did a chest x-ray and viral panel. Liam tested positive for Influenza Type 4 and he had developed Bronchiolitis (his bronchioles in the lungs were inflamed and had thick mucus buildup) and Liam was having a very hard time breathing. ENT came and scoped Liam and also determined he had a large adenoid blockage and inflammation. ENT said Liam would likely need an adenoidectomy and he would need a sleep study prior to the procedure and there is a long lead time for a sleep study and to schedule the procedure. Pulmonology also saw Liam after being in the hospital for four days and said to simply monitor him at home on the pulse ox and supplement oxygen as needed. We went home after five days at the PICU on oxygen support awaiting a sleep study to be scheduled.

In the new year, Liam headed off to an intensive therapy camp. Liam did hard work there but mom noticed he was not getting any healthier, he sounded worse and his work of breath looked worse. She called the ENT team requesting a sleep study as soon as possible. They were able to get Liam in 3 days after returning home from camp.

Liam has attended two intensive physical therapy camps and is preparing for his third. We have seen continuous, small, incremental improvements with each camp. We like to call these "inch stones" as opposed to milestones that are common for neurotypical children. Liam is one year old now and with all the hard work he has been putting in between therapies every day and his intensive camps he can hold the following positions for a short period of time unassisted; ring sit, side sit, and quadraplex. With a little assistance he can high kneel and push up to standing. That being said Liam has to be placed/ encouraged to get into these positions. He is not able to get off the floor into any of these positions on his own.

We are starting to purchase/ order durable medical equipment for him. These tools will allow him to engage in normal every day activities (ie sit up for book time at night, take a bath), to help find adaptive ways to be a part of our family activities (ie ride in the bike trailer), and to reinforce good habits that are being learned through therapy.

#HelpBabyLiam