I know how painful bleeds can be, even in the presence of treatment. Whilst haemophilia has impacted my life in many ways, I can draw more positives than negatives from my experiences. Perhaps one of the most challenging moments growing was having to learn how to intravenously inject myself.
People with severe haemophilia B need to inject a treatment called factor IX. I inject it every couple of days, which temporarily replaces the missing protein and treats bleeds if and when they happen. Finally, after giving birth to four girls, between — , Nicholas and Alexandra had a son Alexei, who became heir to the throne. Little did he know that the boy would have a very difficult life and meet a grim fate. This congenital disease is marked by slow blood coagulation, and so the smallest bruise often becomes prolonged internal bleeding.
Sometimes Alexei couldn't even walk. That's him and his 'sailor nanny' on a bicycle in Friedberg, Hesse, The most excruciating moments for the boy were when blood seeped into his joints. The only way to remedy the situation was through massage and exercise, but this was also fraught with the danger of more injuries and bleeding.
A famous doctor? No, a Siberian mystic and a self-proclaimed saint who made it to the court. When in Rasputin met Nicholas and Alexandra, he convinced them that he could help — and he did. One thing is clear — Alexandra and Nicholas II believed in Rasputin, and so he gained unbelievable political influence. Then, 18 months later, in July , Alexei and his family were executed. And this boy could be naughty. At the same time, people who met him remembered the tsarevich as a kind person.
His birth was a cause for much celebration throughout the Russian Empire, for he was the long-awaited heir to the throne. However, he was only a few days old when he began to bleed uncontrollably from the navel. He was diagnosed with hemophilia B, a condition that could be traced back to his maternal great-grandmother Queen Victoria. There was no treatment for this deadly blood disease in the early twentieth century, and the life expectancy was just thirteen years.
This diagnosis devastated his parents, and they devoted themselves to keeping him alive and well. Two sailors were assigned to keep a close eye on Alexei, as the most minor cut or bruise could potentially be fatal. Despite his disease, Alexei was a bright, active child. He was doted on by his four older sisters, Grand Duchess Olga, Grand Duchess Tatiana, and Grand Duchess Maria, and had an especially close relationship with the family prankster, the youngest girl, Grand Duchess Anastasia.
Alexei was compassionate and sweet, and suffered patiently through the frequent cruel attacks of his disease. The excruciating pain and long recovery periods left him nearly permanently disabled and put a dent in his education.
He was naturally quite intelligent, though, and spoke three languages. One very serious crisis happened when he was eight in in Spala, Poland, after a tumble in a boat. He seemed fine for a few days but he later began to hemorrhage internally in his leg and abdomen and was not expected to live; he was given the last sacrament. However, Alexandra received a telegram from the faith healer Grigori Rasputin, and Alexei miraculously recovered. This incident strengthened his mother's undying faith in Rasputin that stayed until his murder in During World War I, Alexei accompanied his father to military headquarters, known as Stavka, to observe the life of a soldier.
He charmed and won the hearts of both enlisted infantrymen and high-ranking officers alike with his youthful energy and simplicity. When the first Russian revolution came in March , his father abdicated, and after a candid conversation with his son's doctors who told him that Alexei wouldn't survive much longer, he renounced the tsarevich's claim to the throne as well.
The tsar and his family were placed under house arrest in the Alexander Palace, and in August they were moved to the Governor's House in Tobolsk, Siberia, allegedly for their own safety, but in November the Bolsheviks took power and there was little hope of getting the family to safety left. While in exile in March Alexei suffered a fall and a severe hemorrhage ensued; he was in such pain that he begged his mother to let him die.
He was too unwell to accompany his family to Ekaterinburg, to where they were now being exiled. Nicholas, Alexandra, and Maria left for Ekaterinburg, and the four other siblings joined them in the Ipatiev House in April. For the remaining four months of his life Alexei was unable to walk. He found consolation in writing letters to his friend Kolya and playing card games with his sisters. He was very pious and spent much time praying.
In the early morning hours of July 17, , the family was woken and told they were being moved to the basement to avoid being caught in the gunfire that was raging in the city outside. The tsar and the empress, the four grand duchesses, the tsarevich, and four loyal retainers were led down the steps to the basement and and were posed as though for a portrait.
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