You see, at an appointment at about 20 weeks of pregnancy, an ultrasound detected a brain abnormality. The follow-up tests revealed a diagnosis of Hemimegalencephaly which is a rare neurological condition in which one half of the brain, or one side of the brain, is abnormally larger than the other. The unusual and enlarged brain tissue causes frequent seizures and often leads to related health and functional challenges throughout life.
Allie and David's faith and positive outlook lead them to view the early diagnosis as a blessing because most families do not learn of the condition until after birth when their baby starts seizing. The early detection helped them prepare emotionally for his birth. Also, it meant that he would immediately be admitted to the Neonatal Intensive Care Unit (NICU). This was a double blessing since Leo was also born with a tear in his lung which lead to faster treatment of that complication as well.
Our little friend had his first seizure within hours of birth. He had an EEG and was started on phenobarbital to stop the seizing. While in in the NICU a cataract was also discovered and he received cataract surgery at 6 weeks old.
He began having infantile spasms at 5 weeks. These are the most detrimental form of seizures in terms of causing developmental delay. After another EEG he was put on a high dosage of steroid. He is currently taking 3 different medications and using 3 eye drops multiple times daily.
For now Leonardo's seizures are being effectively treated with steroids, however a hemispherectomy
surgery is a near certainty. Doctors and his family are hoping that the surgery can be delayed until he's between 6-12 months old as that will be a more optimal time for the most positive outcome. The surgery involves separation of the two hemispheres. If that does not stop the seizing, they will remove the left hemisphere. After surgery, he will need physical therapy, as well as possibly speech and occupational therapy, etc. depending on results.
Dear Friends, the Terrazas family could really use your love, faith and prayers. David and Allie both come from large, wonderful families who are full of faith and optimism, but that doesn't mean that the road will be easy.
Please Consider Donating
Along with your love and prayers, please help Allie and David by donating whatever your budget allows to help offset the tremendous medical expenses. Thankfully they have good health insurance but the costs are still daunting and will obviously continue to multiply as surgery and ongoing treatment and medication are forthcoming.
It's Christmastime which means a couple of things:
* Money is tight, but also,
* It's a time for being thankful for all we've been blessed with and a time for giving.
So please take some of that money that you've set aside to bless someone's life this Christmas and send it to Allie and David.
We'll end this for now with some tender words from Allie Schulte Terrazas, Leonardo's beautiful Mom:
"I was able to see my sweet baby Leo for the first time in the NICU about an hour after birth. From the first moment I laid eyes on him, I could feel what a special and strong soul he is. Within minutes, I was witnessing his first of many seizures, and in every day since then, his happiness and resilience has been a constant source of hope and strength for us as his parents. Through every procedure, every moment of discomfort, every day of taking multiple meds, he has been our example of joy in the face of trial and uncertainty. We are so grateful to be his parents and for the many, many people in our lives who love him as much as we do."
Merry Christmas, everyone!
#Light the World
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