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Enzo O'Neill

Cantius

 

2012 was a rough year. 2013 was a relentless onslaught of one crisis after another.

 

We were planning and prepared for a new addition to our family - a very welcomed new little brother for our daughter. We had saved up a decent emergency fund. We had paid off our debts. We had all of the baby paraphernalia purchased and home all ready for when Enzo arrived. We were ready for a baby, but no one can ever truly be ready for a medically complex child such as Enzo. Enzo was born November 6, 2012 and within a few hours we started to find out that things were going to be different this time around. We learned that first day of his heart defect, hip dysplasia and an inguinal hernia. That was heavy news, but in the coming months we were to learn that his initial diagnoses were but a drop in the bucket.

 

Enzo has an exceptionally rare connective tissue disorder which affects many different systems and organs in his body. It affects his muscles, his joints, his brain, his eyes, his esophagus and bowels, his ears and sinuses, and his blood vessels including all arteries and veins and his heart. His joints are lax and hypermobile so he easily injures himself by hyperextending his knees, elbows and shoulders. His muscles are hypotonic so he has significant developmental delays. He has dysautonomia related to a baroreceptor reflex failure. This means that Enzo’s blood pressure, temperature, pulse, respiratory rate, venous return to the heart, esophageal and bowel motility, pupil dilation, and all other autonomic nervous functions do not respond appropriately and cause systemic problems that often end Enzo up in the ER. He has severe reflux which unfortunately cannot be treated with typical measures due to his underlying connective tissue fragility. So he refluxes and aspirates and chokes often which also results in more EMS involvement in our lives than we’ve ever had before. Let’s just say that neither Paul nor I will ever forget the steps involved in infant CPR. Perhaps the most frightening aspect of Enzo’s condition is his cardiac diagnosis. Enzo has an ascending aortic aneurysm and a bicuspid aortic valve. The aneurysm is a life-threatening heart defect with very poor options for treatment. It is managed now with very frequent monitoring and medication. Eventually it will necessitate open heart surgery - likely many over the course of his life.

 

Enzo is followed by 17 clinics and services at the Children’s Hospital: Cardiology, Neurology, GI, Urology, Clinical Genetics, Orthopaedics, Respirology, Rheumatology, Neuromuscular, Hematology, Ophthalmology, Audiology, Infectious Disease, Vascular, Physiotherapy, Occupational Therapy, and Speech Pathology. He has had countless echos, EEGs, EKGs, MRIs, blood tests, probes, and other tests we’d never heard of until we met Enzo.

 

Although we are exceptionally grateful to live in a country with universal healthcare, we have been shocked by how expensive caring for a medically complex child can be. Enzo’s formula alone costs over $2000 each month. His medications, orthotics, and specialized equipment add even more to that amount. Enzo requires 24 hour nursing from a parent or medically qualified caregiver and cannot attend regular childcare. As his hospital admissions have been prolonged and frequent and his clinic visits are at minimum 3 times a week, it is impossible for both parents to work. Finding childcare for our older child, transportation to the hospital, hospital cafeteria food while admitted, and the loss of half of our income have all been incredible blows financially as well.

 

We received our incredible gift from the Sarah Faith Hogan Memorial Fund at one of our darkest moments. It was a Friday when Enzo was becoming increasingly ill and was being admitted on the Monday for what became his longest admission so far. He was admitted for 31 days including over the Christmas holidays. The financial gift we received paid for formula, medications, and new medical equipment for Enzo and allowed us to bring Enzo home earlier than we would have been able to otherwise.

In a year that also brought us a flood, cancer and a layoff, the gift from the Sarah Faith Hogan Memorial Fund was a shining moment. It meant not only financial relief, but also showed us the incredible generosity and support available in our community. Parenting a child with a chronic and life-threatening medical condition can be a crushing burden at times, and this gift lifted some of that weight. Melinda and the SFHMF made us feel not quite so alone anymore and we are incredibly grateful that this organization was here for us in our time of great need.

 

Rachael O'Neill

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Sarah Faith Hogan

november 8, 2004 - january 22, 2006

The Sarah Faith Hogan Memorial Foundation was formed in loving memory of Sarah Faith Hogan and is dedicated to the selflessness and courage of Sarah’s grandfather and mother, Chuck and Cathy Hogan.

 

The Hogan’s immediate and extended family are a true inspiration and a testament to the power of love and the family bond.

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