Mia's Journey - Dravet Syndrome
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On January 10th, 2012 our bundle of joy arrived. We named our daughter "Mia", which means "Beloved" and "Wished-for-child". As first time parents, we were excited, nervous, and had all wonderful dreams and hopes that every parent has (and deserves) for their child.
At six months of age, Mia had her first seizure after a bath. A day we will never forget. A day that has marked the beginning of a life long journey of medical urgent care needs. This was the first of many trips to the Emergency Room and Pediatric Intensive Care Unit (PICU) for Mia. In the months that followed, seizures became more frequent and prolonged. On more than one occasion, a medical induced coma has been necessary to stop her severe seizures.
After prolonged EEG's, MRI's, and genetic testing, our worst fears came true. Our neurologist informed us that Mia had a mutated gene, and was diagnosed with Dravet Syndrome, a rare and catastrophic form of epilepsy for which there is NO CURE. Mia will not outgrow her seizures. Dravet Syndrome will rule her daily life. Many things triggers Mia's seizures: Sickness, over-stimulation, sleep deprivation, temperature increase or decrease, photo-sensitivity, pattern-sensitivity and any changes to her daily routine. One most terrifying thought to a parent with a Dravet child is that they have a high mortality rate due to SUDEP or complications from prolonged seizures.
Mia is also starting to show signs of developmental delays (regression), which is also part of this devastating disease, so we're doing all we can to counteract the effects by putting her in speech, physical, and occupational therapy and treating her with the best meds available for this condition, but we're in desperate need of help.
Why we need your support:
We can no longer allow Mia to attend a regular day care, given the exposure to live viruses as is common in day care facilities. We now require experienced qualified nursing care by a professional who can immediately address these life threatening seizures. Fortunately, our Local Regional Center has recently approved care for Mia, but the ongoing need for medications expenses and hospital bills, is still there.
We don't know what the future holds, but one thing is certain, we will be THERE for her!
Michael, Marcela and Mia Villalobos
Note: Morgan Amelia Foundation is also accepting donations on behalf of Mia at http://morganameliafoundation.org under the DONATE tab.
At six months of age, Mia had her first seizure after a bath. A day we will never forget. A day that has marked the beginning of a life long journey of medical urgent care needs. This was the first of many trips to the Emergency Room and Pediatric Intensive Care Unit (PICU) for Mia. In the months that followed, seizures became more frequent and prolonged. On more than one occasion, a medical induced coma has been necessary to stop her severe seizures.
After prolonged EEG's, MRI's, and genetic testing, our worst fears came true. Our neurologist informed us that Mia had a mutated gene, and was diagnosed with Dravet Syndrome, a rare and catastrophic form of epilepsy for which there is NO CURE. Mia will not outgrow her seizures. Dravet Syndrome will rule her daily life. Many things triggers Mia's seizures: Sickness, over-stimulation, sleep deprivation, temperature increase or decrease, photo-sensitivity, pattern-sensitivity and any changes to her daily routine. One most terrifying thought to a parent with a Dravet child is that they have a high mortality rate due to SUDEP or complications from prolonged seizures.
Mia is also starting to show signs of developmental delays (regression), which is also part of this devastating disease, so we're doing all we can to counteract the effects by putting her in speech, physical, and occupational therapy and treating her with the best meds available for this condition, but we're in desperate need of help.
Why we need your support:
We can no longer allow Mia to attend a regular day care, given the exposure to live viruses as is common in day care facilities. We now require experienced qualified nursing care by a professional who can immediately address these life threatening seizures. Fortunately, our Local Regional Center has recently approved care for Mia, but the ongoing need for medications expenses and hospital bills, is still there.
We don't know what the future holds, but one thing is certain, we will be THERE for her!
Michael, Marcela and Mia Villalobos
Note: Morgan Amelia Foundation is also accepting donations on behalf of Mia at http://morganameliafoundation.org under the DONATE tab.
Organizer
Marcela Anzoategui- Villalobos
Organizer
San Jose, CA
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