Jesse's story is a striking example of how important blood donation is. Jesse, who miraculously survived premature delivery, suffers from dwarfism and Cartilage-Hair Hypoplasia, which causes severe anaemia. For this reason, he has been given blood transfusions practically all his life, at first at two-week intervals, and later once a month.
On the day of the visit, 15-year-old Jesse has just come home by bicycle from Riihenmäki school in Mäntsälä, where he goes on the ninth grade. Soon the bicycle will be replaced by somewhat more powerful vehicle, once Jesse gets his microcar licence. A special-made buggy has already been ordered.
After school, Jesse plays Playstation games with a friend; this time it seems to be a fast NHL game. Last summer Jesse went to a confirmation camp and had his confirmation party.
“My favourite game is ice hockey, which I have not played myself. I have played soccer and floorball in local associations though. In winter, I like to snowboard,” Jesse says.
In ice hockey, Jesse's favourite team is Helsinki IFK and he is an eager user of his season ticket. Going to see games is a hobby shared by Jesse and his father Tommi Spännäri. On his wall, Jesse has an HIFK hockey jersey with the signatures of all the players.
The family dog Hugo has apparently been given some football training as well, since it is not an easy job to take the ball from him. Jesse also takes care of the dog, who is, according to him, “quite nice – when he doesn‘t snore”.
Jesse has a total of four younger sisters and two dogs in two blended families. The parents live near each other, so living with each of them in turns goes with routine. Jesse's school is going in the same manner as with any other kid in his age, even though doing homework is not his favourite pastime.
“Despite all the hardships life has given him, Jesse is pretty smart, considering that his brain was deprived of oxygen for 15 minutes when he was born. If only he took the trouble to do his homework every now and then, who knows how high his grade average might be,” Tommi says with a grin.
After comprehensive school, Jesse would like to study at vocational school to become a practical nurse. Many of his friends have similar plans.
“There are many options for practical nurses. I would be interested in working with children and young people,” Jesse says.
Recovery from cerebral infarction
When talking with Jesse, one would never believe that he had a cerebral infarction in December 2014. One ordinary Friday night, Jesse collapsed on the bathroom floor when staying at his mother Heidi Pekkala's home. Luckily, the adults were near and could call the ambulance immediately.
“Jesse did not display any typical infarction symptoms, and it was only the head CT that revealed the brain haemorrhage. Doctors were warning us that our son would need to learn many basic things anew,” Tommi recounts.
As by a miracle, the severe injury did not leave any permanent signs on Jesse. The boy returned to school just like that after having gone to an adjusted school for a while.
“Although, we kind of guessed this already at the Children's Hospital. We came to the ICU when Jesse was waking up, and the first thing he said was: ‘What the h--l am I doing here’. In other words, he was all right,” Tommi says with a laugh.
The cause of the infarction was never found, and it was probably a sum of various factors. Soon after the infarction, the familiar blood transfusion routine was also restored.
“Blood transfusions have become so much a routine that I do not even think about them much. We drive to Helsinki with mom or dad and spend a day at the Children's Hospital. It gives me new energy, of course. At the same time, we go out to town or eat out somewhere,” Jesse explains.
“The blood transfusion days are marked on the calendar for a long time ahead. When that time approaches, I notice that the boy is getting a little irritable and he tires more easily. His body does produce red cells, but they are of the wrong kind,” Tommi adds.
Stem cell transplant might be a suitable form of treatment in Jesse's situation. However, the family is in no hurry with it. They will let Jesse decide himself whether he wants to take the heavy treatment once he comes of age. At least until that time Jesse will need blood given by blood donors every month.
Donated blood is Jesse's lifeline
So far, Jesse has received donated blood for almost 400 times. Many recipients of donated blood need blood products continuously for survival. In other words, not all recipients need blood to recover from an accident or surgery, or for treatment of an acute disease.
“Without blood donors Jesse would not be here. Of course, Jesse's story catches attention, but there are also many others who need blood,” Tommi underscores.
Therefore Jesse and Tommi urge everyone who has ever considered it to go and donate blood.
“You can never know when you or someone you love needs it. The minor effort it requires is actually a major act, when you consider that by donating once you may possibly help as many as three patients."
Text: Minna Kalajoki / Mediafocus
Photos: Jari Härkönen
Published in 2015