About Matthew Tragus
Matthew was born on June 9, 2010, He was 8 pounds and had a full head of hair. Matthew was a very sweet baby, he brought joy and lots of love into our home. His two older brothers Thomas and William loved him and spoiled him every day. And his younger brother Lucas follows him around every day. A few days after Matthew had his first birthday, he became very ill with an unknown virus and developed bronchitis and pneumonia while on antibiotics. As he became sicker and sicker, we rushed him back to the ER and were told that his blood oxygen was very low and his heart rate was dangerously high. It took doctors several hours to stabilize him enough to go to the intensive care unit. Almost a week later, we were able to bring him home. Little did we know that this was only the beginning of Matthew’s health struggles.
When Matthew was close to three years old, we noticed, along with his teachers, that he would not always notice when his name was called or when someone tried to get his attention. He would often seem disoriented and looked as though he was trying to get his bearings straight. Soon after that, Matthew’s speech would suddenly go away and then spontaneously return. Concerned, we took him to his doctor who referred us to get his hearing checked. His hearing checked out fine and we were then sent to a speech pathologist to do an evaluation. The Speech Pathologist concluded that he had Childhood Apraxia of Speech as well as receptive and expressive language delays. We were informed that Apraxia is a sign of a neurological condition and to see a neurologist. We ended up at Children’s Hospital Los Angeles where he was evaluated by Dr. Ramos Platt. She confirmed that something significant was going on neurologically. She felt that it might be a very rare form of Epilepsy and needed to perform more test to be sure. After an MRI and an overnight EEG, results showed that Matthew was having seizure activity almost the entire time he was sleeping. The seizures were preventing his brain from doing the things we all need our brains to do while sleeping. His doctors diagnosed him with Landeu-Kleffner Syndrome. Matthew has lost the ability to verbally communicate and now goes to speech 4 days a week in addition to speech therapy at school as a ways to try to get him to regain his speech. He is on multiple medications all the time as well as receiving a 3-1/2 hour IV immunotherapy each week from a nurse that comes to our house and administers it to him via a port in his chest.
Matthew is in and out of the hospital continuously. When his symptoms worsen and his physical and communicative abilities diminish too much, he is admitted to the Pediatric Intensive Care Unit (PICU) for three to four days to receive intense doses of medication that are too dangerous to take outside of the care of a hospital. We have been in the PICU 5 times in the past year, which is completely exhausting for our whole family. Having one parent at the hospital the entire 4 days and the other keeping the household and school going is a huge challenge.
Matthew’s doctors have not been able to control and suppress his seizures to a level that will help his brain heal and allow him to talk and hear again. As a result of all this, he has learning a social difficulties as well. Without suppressing his seizures, he may have a very short life. We were told that if his seizures can’t be controlled, he could go to bed one night and never wake up again. Imagine kissing your child goodnight each evening without knowing if he will wake up the next morning. Treating Matthew has been a huge challenge. His disease is very rare with only a couple hundred children in the U.S. struggling with it. As one can imagine, finding hospitals and doctors who are familiar with treating this disease is difficult. That is why our doctors have asked us to take Matthew from California to Minnesota to have him treated at the Mayo Clinic, where the Pediatric Epilepsy Doctors have more knowledge and experience in treating Landau-Kleffner Syndrome. Our Family
Our family is big, loud and fun. Father Bill and Presvytera Mia have married for over 13 years. They have 4 boys. Thomas (10), William (8), Matthew (6), Lucas (3). Thomas is all personality and William is a scientist at heart. William has medical issues as well and struggles with a rare auto-immune disorder called Eosinophilic Esophagitis, which puts him in the operating room two to three times a year for a endoscopy and multiple biopsies. Matthew is the comedian of the family. If he isn’t laughing at something, he is trying to get you to laugh by doing something silly. Lucas spends most of his day trying to keep up with his brothers and snuggling anyone who will indulge him. The cost of our trip to the Mayo Clinic
Mayo Clinic - St. Mary’s Campus, Rochester, Minnesota. Matthew, both his parents, and a caregiver will be at the hospital from December 12 – 17, 2016.
Hospital Stay $23,676.00
In hospital MRI, LABS, Spinal Tap $23,146.00
In hospital EEG Monitoring $1,685.00
In hospital Intravenous Immunoglobulin Therapy $1,750.00
Outstanding bills $842.00
At home Intravenous Immunoglobulin annually $3,768.00
Augmentative and Alternative Communication Device $500.00 TOTAL $57,112.00
#GoBeyondGiving - Thank you for your donations. Matthew Tragus has Landau-Kleffner syndrome, a rare form of epilepsy that causes continuous seizures resulting in many physical and communication disabilities. The family is going to the Mayo Clinic in December, and the costs not covered by insurance exceed $57,000. Extra funds raised will go to a medical savings.