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Funding Research for a Cure to Secure a Brighter Future for Elizabeth and Children Like Her with Vici Syndrome
Together, we can make a difference in the lives of children like Elizabeth. We're on a mission to raise $1,000,000 for vital research for Vici. Your donation will help initiate drug testing in mice, potentially paving the way for treatments for children with Vici syndrome, who currently lack viable treatment options. Join us in making a difference today by making a donation.
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Born with A Rare Disease
A Journey of Unexpected Challenges
Elizabeth's entry into the world was marked by unforeseen obstacles. At 32 weeks of pregnancy, routine ultrasound scans revealed abnormalities, setting off a chain of events that would forever alter our lives. As parents eagerly anticipating the arrival of our precious child, we never imagined the unique challenges that awaited us. Yet, Elizabeth's birth introduced us to a world where resilience, hope, and unwavering love became our guiding lights.
Cardiology
Cardiac issues
Children with Vici Syndrome could develop heart problems such as Cardiomyopathy. It's a condition where the heart muscle becomes enlarged, thickened, or rigid, can lead to heart failure, arrhythmias, and other cardiovascular complications.
Immunologist
Immunodeficiency
Having combined immunodeficiency means that the immune system, which helps our bodies fight off germs, isn't working well. This can make people with Vici syndrome get sick often and really badly because their immune system can't fight off infections like it should
Neurologist
Neurological complications
Kids with Vici syndrome usually have agenesis of the corpus callosum, a condition where the structure connecting the two halves of the brain is missing. This can lead to various neurological issues including developmental delays, intellectual disabilities, and seizures
Ophthalmologist
Ophthalmological problems
Cataracts in Vici patients, which are typically present from birth or develop shortly afterward, can impair vision and require surgical intervention.
Pulmonologist
Respiratory issues
Respiratory infections and complications can occur due to both immunodeficiency and neurological involvement, such as dysphagia leading to aspiration pneumonia.
Rheumatologist
Musculoskeletal abnormalities
In some cases of Vici syndrome, children may exhibit recurrent fever episodes, often occurring weekly, due to an inflammatory reaction. To address this symptom, treatments such as immunoglobulins or liquid steroids have been administered to help regulate the inflammatory response and manage the fevers.
Shining a Light on the Rarity of Vici
Fighting for lives of children suffering: Seeking Global Support When All Other Avenues Are Exhausted
Vici syndrome is exceptionally rare, with only a handful of documented cases worldwide. It falls into the category of ultra-rare diseases, meaning that it affects fewer than one in every million people.
This level of rarity poses significant challenges for diagnosis, treatment, and support, as there is limited understanding and awareness of the condition within the medical community.
The scarcity of information makes it difficult for affected individuals and their families to access appropriate care and resources. As such, raising awareness about the rarity of Vici syndrome is crucial to advocate for better research, support, and treatment options for those living with this condition.
Time Is Critical: Children Are Suffering & Dying. Yet, Doctors Are on the Verge of a Breakthrough With Sufficient Funding
Just the other night, I was helping my son build furniture in his bedroom And I hear a scream from the other bedroom.
I dropped the tools and ran to the other room only to find my wife holding Elizabeth. My little daughter whose only 8 months was working so hard to breath.
She was burning hot from fever and her heart rate was lower then usual.
We started freaking out, running around the house grabbing oxygen tanks, diaper bags, & belongings so that we could rush Elizabeth to the Emergency room.
I can’t even imagine how this affects my other 2 kids.
Watching their parents scramble around the house in fear only to be left alone at home not knowing if there little sister is going to be okay.
Unfortunately, these scares are our reality and has occured often during Elizabeths life.
Children with Vici deserve someone to fight for them as their bodies can only handle so much.
Nights like these could be avoided by a simple donation today, which can help find a cure or therapies to help these children live a full life free from suffering.
Geneticist at childrens
More about the breakthrough research
Geneticist at childrens
More about the breakthrough research