Mason was born on January 6th, 2015 at Mt Sinai hospital. I was unable to hold him or see him properly since he needed to be put on prostaglandins, a drug that keeps a duct open in his heart to keep him alive. Normally this duct closes within a few days of life for heart healthy babies. For Mason, having this drug kept him alive.
Mason was born with a rare heart sefect called hypoplastic left heart syndrome. He basically has half a heart. He had one open heart surgery called the "norwood procedure" at seven days old. This is a palliative procedure and doesn't fix the heart. It reroutes the blood so he has as close to a normal circulation as he can get. However, this circulation mixes the blue and red blood, so he lived with 75-85 percent oxygenation in his blood(normal people are 95-100).
He suffered from feeding issues until he was almost 4 months old, living by eating through his g-tube. Thankfully, he had the will and gradually gained the ability to take his bottle around 6 months of age, which was great because he had started to go into heart failure, requiring his second open heart surgery on July 2nd, 2015.
Fortunately, the recovery for this surgery was quick, but the doctors didn't tell me he had bilateral superior vena cava, which meant that with this second surgery he would need to be on blood thinners for the rest of his life. These blood thinners are injected into his thigh every 12 hours. It is a very expensive drug, 90 dollars per vial and one vial lasts about 2 weeks. The needles are also 5 dollars for 10.
Mason also has an extremely small aorta. He has a coarctation right where the aorta meets the heart. The fixed size is roughly the size of a coronary vessel. Theres not much they can do for this because tissue only stretches so much. He also has narrowing in his pulmonary artery and severe leakage in his tricuspid valve which will eventually lead to heart failure and most likely a transplant down the line. He is also ineligible for the fontan, which is the last palliative surgery for hlhs, because of this.
Mason is still fragile and will never be fixed. We have a ton of appointments during the month. Hematology, ot, pt, cardiology, pediatrician(at the hospital, on top of his normal pediatrician visits), dietician, etc etc.
He is unable to take the bus so we take uber. I do get coverage for some of the appointments but if we go more than 4 times it is out of pocket. And being a single mom, who is unable to work due to all these appointments, takes that money out of her personal money, which is not a lot. And if we have an emergency room trip, that is out of pocket. It costs me 13 dollars one way to the hospital, plus food.
Mason also has a milk protein allergy and requires a special diet which is not cheap.
I am trying to go back to school so when the appointments die down, I will be able to get a job. Unfortunately, all these extra costs are really making it quite impossible. I just want to be able to provide for my son as best I can, but it really isn't easy.
On top of all of this, I received a call not too long ago that Sick Kids hospital in Toronto( the only hospital that can handle his complicated anatomy and is still his main care) looked at his previous echo results from December and they think he has developed a clot. So now he will need a ct scan and possibly another catheterization, which will take place in Toronto. While the government thankfully covers his care, food and lodging for me are out of pocket (unless we get into ronald mcdonald house).
All of your help and time is appreciated.
Your donations will go towards helping pay for costs incurred through masons medical needs and bettering our life. Please help if you can!
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