My beautiful son Jay was born October 16, 1966 at Scarborough General Hospital. The doctors new immediately that there was a serious health problem as Jay struggled to breathe, his abdomen was grossly enlarged and his skin became dark yellow about four hours after delivery.

His pediatrician spoke to me later that morning and stated he thought that Jay would have been gone by morning; that he had some kind of blood disorder, a type of hemolytic anemia. This of course was a shock to me as I had no idea how sick he was.

One week after Jay was born he received his first blood transfusion. After three weeks in the hospital where he was born he was transferred to The Hospital for Sick Children in Toronto. It was thought that the doctors at HSC would have a better chance of coming to a diagnosis as hemolytic anemia covers a broad range of blood disorders. During the car ride to Sick Kid’s I held Jay for the first time.

It took a while for the doctors to figure it out but they finally came to the conclusion that Jay had a rare form of hemolytic anemia called Stomatocytosis. Jay was the only case in Canada and only one of seven in the world.

This disorder manifests itself when the bone marrow produces large, sticky blood cells that die very early. As a result, Jay needed many more transfusions within the first year of his life. It was determined after that, that a steroid drug would keep his hemoglobin elevated enough so that he would no longer need the blood transfusions.

At four years of age Jay had a gall bladder attack. The doctors at Sick Kids determined that having his spleen taken out along with his gall bladder could cure his blood disorder. This seemed to work for a few years. Other than regular check-ups at Sick Kid’s, Jay was like most other children his age, he went to school, played sports and had fun with his younger brother Corey. At 6 & 14 years of age Jay had setback’s and needed more blood transfusions. He continued to do well through most of his teenage life until the age of 19 when he had a pulmonary embolism.

This was another sign that all was not well with his disease. They found out much too late that he should not have had his spleen out. That was a course of treatment for another disorder called Spherocytosis which is more common and so this did not help him. He needed his spleen to break down the large, sticky blood cells.

Jay was put on blood thinners and seemed to do well until he was 29 years old at which time he had a major heart attack due to blood clots. Within a couple of years of this event he developed shortness of breath, lost weight and was unable to work. After a second heart attack he was given an angiogram which determined that he had right sided heart failure caused from the inability of his large, sticky blood cells to get to the small capillaries in his lungs. The doctors at this time had no idea what to do. One specialist in Hamilton suggested that he be put on the lung transplant list and that his lung issues had nothing to do with his blood disorder.

My husband and I decided that we needed to become more pro-active and started to research the disorder to find more information, locate other people with the disorder and perhaps any doctors with experience treating the disorder. We sent letters to dozens of hematologists in North America but ended up finding an article at the University of Toronto with the name of a doctor in England. I spoke with him and he gave me the name of a doctor in Rochester, New York who had three members in one family with the same disorder as Jay. (Jay became a close friend to one of these patients…Art) Dr. Smith was an expert in “Stomatocytosis” and was more than happy to take Jay as a patient. We made arrangements for OHIP to cover the medical expenses and Jay and I travelled to Rochester to see Dr. Smith.

Dr. Smith prescribed “Hyper Transfusions” to suppress his bone marrow from manufacturing the large, sticky blood cells. Over the next 15 years Jay would receive over 400 units of blood. This kept him alive but it was not a cure. Jay continued to develop blood clots in spite of the blood thinners and transfusions. Jay was hospitalized numerous times during these fifteen years until finally on February 16, 2011 he suffered a major unrelenting seizure followed by a cardiac arrest. He was in the emergency room at the time but doctors were helpless to do anything but put him on life support.

Jay was transferred to Hamilton’s Nuero ICU where he had several CT Scans. We learned that he had suffered a “Cortical Thrombosis” which is a blood clot in the brain. He would not recover.

Jay was taken off life support and passed away March 1, 2011.

The whole point of sharing my son’s story is to encourage all able-bodied people to donate blood. Without this gift of life Jay may not have lived after birth and certainly would not have been with us the last 15 years of his life. Blood transfusions not only kept Jay alive but also gave him a better quality of life because he was able to work, get married and be a parent to his daughter Katie. He was a brother, brother in-law, uncle, nephew, cousin and great friend. He loved to ride his Harley Davidson. He was certainly never defined by his illness.

Some people think blood is used most often for surgeries and other emergencies but some individuals need blood daily, weekly or monthly like Jay for a chronic medical condition.

Canadian Blood Services holds Honour Clinics throughout the year and one week in December each year is set-aside for Jay and is called JAY’S ANGELS. I advertise by handing out pamphlets and word of mouth etc. This is a way to educate people of the need to give blood not only during this week but every day.

Thank you for taking the time to read my son’s story and a profound thank you to those of you whom have donated. Remember, when you donate blood, you are saving a life. You saved my son’s for over 40 years.

Janice Grainger