Justin Coats and Katherine Malca desperately want to share the story of their happy 5-year-old son, Eli Coats. Eli has a great sense of humor and enjoys things that typical boys do, most significantly swimming and his hero, Captain America.
Eli was born prematurely at 30 weeks and at age one was misdiagnosed with Cerebral Palsy. He had many respiratory infections due to being born premature and his health quickly regressed after he was sick with the flu in February 2015.
Eli was hospitalized for 2 months due to what the doctors thought was Flu Encephalopathy. He immensely regressed and their lives changed drastically. He required tube feedings, countless medications, and intensive therapies for him to learn all of the skills he lost.
One day, Eli was attending Opportunities, Inc. for school when Katherine received a call that he was running a fever and needed to be picked up.
Eli was taken to Collom & Carney where he tested positive for the Flu and began taking Tamiflu. One day, Katherinea and Justin noticed Eli was extremely lethargic and began acting unusually out of character.
His parents brought him to his Primary Care Physician and Eli was put on IVs for dehydration and they were told that he needed to rest. His fever and symptoms weren’t improving, so mother’s intuition told Katherine something wasn’t right and they contemplated bringing Eli to Little Rock; however, decided to wait until the morning.
Overnight, Eli woke up and repeatedly said, “Mom, Go!” Katherine panicked when she noticed Eli was delusional.
They went to the Emergency Room and a CAT scan was performed. Results showed irregularities. Immediately, Eli was placed in an ambulance and transported to Little Rock, Arkansas. He was completely rigid and immobile, all limbs tight and unable to move. Blood work was taken and the medical staff noticed he wasn’t responsive to the care. Eli was then transferred to the ICU.
After a week of tests, the doctors said Eli’s brain was swelling, but they couldn’t determine the source of what was causing all these symptoms. They believed the flu was causing the swelling, but they couldn’t provide any more answers. Katherine and Justin were told to expect Eli to not make it through that episode.
Thankfully, Eli progressed after that episode and spent two months at Arkansas Children’s Hospital and recovered 90%. He was taking assisted steps, feeding himself, completely potty trained, and was even attending Pre-school half days. Eli began to gain his independence again.
For over a year, Eli continued to live a happy, healthy, and normal life. He even tested well for his numbers, colors, letters, shapes and could write his name unassisted.
Dunbar Elementary provided a great support system in helping transition Eli back to school. His class even held a Captain America day in honor of Eli.
Over Thanksgiving Break, Eli began showing signs of the Flu again and experienced another episode of Encephalopathy. Unable to control his fever, Justin and Katherine drove to Little Rock, Arkansas.
All of Eli’s lab work came back negative, but his fever persisted. This was very concerning to Katherine and Justin and they encouraged the hospital to keep Eli overnight for observation. Eli was unable to eat and tolerate any feedings and stayed for several days at the hospital.
Katherine had to leave for Dallas Wednesday morning and, unfortunately, that’s when life decided to take another drastic turn. Over time, Eli began to regress and became unresponsive. Katherine back rushed home to her son.
A CAT scan and EEG were performed on Eli to determine causes for his symptoms.
Thursday morning, Katherine explains, “Our biggest fear was happening again, Eli’s brain began swelling again.”
“After many tests and almost 3 months of inpatient hospitalization, we received a diagnosis of an extremely rare degenerative neurological condition known as Aicardi Goutieres Syndrome (AGS).
Eli has 2 pathogenic variants in ADAR gene associated with AGS, which is an even more rare degenerative disease.
“To say we were devastated was an understatement.”
There are less than 300 individuals in the world affected by this disorder.
His symptoms include regression with significant chorea and dystonia that are managed with artane, clonazepam, and baclofen, along with many other medications related to this condition. He is at an increased risk for seizures, glaucoma, scoliosis, and hypothyroidisms.
Eli is currently on a clinical trial medication called Baricitinib that helps prevent inflammation in the brain. So far, he has been free from swelling since starting the medication. Aside from experimental treatments, there are no treatments for this condition.
Eli is currently at the level of a one year old. His ability to comprehend is well, but his speech and mobility are very limited. He is not able to stand or take any unassisted steps or even sit up.
Katherine and Eli are currently traveling to Philadelphia every 3 months to the Children’s Hospital of Philadelphia. There they see Doctor Adeline Vanderver where she observes how the trial medication is performing.
The family is also currently looking into a therapy called hyperbaric oxygen therapy in New Orleans to help alleviate brain injuries. This increased concentration of oxygen assists in the healing process and reverse brain damage.
There may not be many answers, but this family has a lot of hope and support on their side.
In order to speak with Dr. Harch there is a fee of $450 for a telephone interview to discuss Eli’s medical history and see if he is a good candidate. If approved the treatment is 8 weeks long, that includes 40 sessions totaling about $10,000; this does not include travel and lodging expenses.
Katherine emphasizes, “After speaking with the nurse, we understand that the sooner we get Eli in this treatment, the better the results. To start Eli’s treatments once he gets approved, we will need to either have the total amount paid in full or pay it weekly.”
You can donate to their Superhero, Eli, by:
*Capital One Bank Account#: 36034695156
OR
Greater New Orleans Foundation 501c3
for Harch Hyperbaric Res Fund,
Attn Allie Betts
919 St. Charles Avenue
New Orleans, LA 70130
(504) 598-4663 P
(504) 620-5264 (direct)
(504) 598-4676 F
gnof.org
Make checks payable to GNOF for Harch Hyperbarics Res Fund, NOTE THE PATIENT NAME: “ELI COATS” in lower left memo area of the check.
Also Please email Juliette ( juliette@hbot.com) , Eli’s nurse, to let her know you are gifting Eli Coats for HBOT treatments with Dr Harch.
