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Shut’ Arsen – severe hemophilia A

October 6, 2010, 15:45 3962 Author: Inna Grigorjeva (translated into English by Daria Sukach) www.deti.zp.ua Arsen’s life depends on regular infusions of the deficient clotting factor. At the moment the boy need not urgent help.

Arsen was born on the 19th of August 2004

Diagnosis: severe haemophilia A, a complicated treatment course, hematoma in the chest and inner surface of the thigh.

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When you look at this cute and smiling boy – it would never cross your mind that he might be seriously ill. But it is a cruel reality of Arsen’s life now – he must be really careful and avoid any activities that may lead to falls, injuries and blows of any kind…But how can you avoid it when you’re just a six-year old boy?

In the bosom of the family

This sad story began after four-month-old Arsen was given some inoculation shots. The baby was bleeding at the site of the shots all day. The boy’s parents were frightened and called an ambulance. The coagulation analysis confirmed the worst predictions – the boy was suffering from hemophilia. As the boy passed his first birthday his family still held hope that the diagnosis of hemophilia might be mistaken. But doctors in Kyiv did not bring his parents any cheerful news.

The medical reference: hemophilia is a group of hereditary genetic disorders that impair the body's ability to control blood clotting or coagulation, which is used to stop bleeding when a blood vessel is broken. Characteristic symptoms are internal joint, muscles’ and internal organs bleeding episodes. Such “bleeds” can occur spontaneously (without any evident trauma) as well as due to the initial trauma or surgery. Even minor injuries can increase the risk of death from hemorrhage in the brain or any other internal organs. Due to the frequent hemorrhage in the joints (hemarthrosis) and the muscular tissues (haematomas) people with severe hemophilia receive disability status. Hemophilia A can be mostly controlled by the replacement therapy – regular infusion of the deficient clotting factor, i.e. factor VIII. Though hemophilia is not curable, there are some known cases when after the liver transplantation patient’s organism started to produce clotting factor VIII.

Today with appropriate treatment, people with hemophilia usually live as long as those who are not afflicted with it. The patient needs regular infusions of the deficient clotting factor which can be isolated either from human blood serum or a recombinant (which is received from animals under laboratory conditions). Arsen’s immune system formed antibodies against the substituted protein from donor blood. As a result Arsen has suffered from fever and Quincke's Edema. That is why the boy had to start a new medication – infusions of the deficient clotting factor ( such best known drugs for hemophilia A factor VIII treatment as “Immunate”, “Kogenate FS”, “Recombinate”, “Koate- DVI”). The state programme provides free medicines to kids with hemophilia in hematological departments, but the Children’s Regional Hospital has been suffering from acute shortage of life-saving medicines for over two months now. Since little Arsen has been in urgent need of this medication, his parents have had to spend their own money to buy it, but they cannot afford it anymore as the cost of even one ampoule of the least expensive kind of clotting factor costs more than 2, 100 UAH ($263.30). Nowadays Arsen needs at least one ampoule a week since he faces acute attacks of the disease in spring and autumn. If this drug is not taken in time he suffers joint deformation which is usually followed by severe pains.

Together with younger brother

As Arsen grows older the symptoms of the disease have become more acute: more and more often Arsen suffers from hemorrhaging in the joints and the muscular tissues because of the vulnerable walls of his blood vessels. At these times Arsen becomes a patient of the hematology department of the Children’s Regional Hospital of Zaporizhia, to receive the necessary infusions of clotting factor and to recover from effects of the hemorrhaging.

…Well, there are not just hospital walls but also some happy moments of life…

The insidious disease does not let Arsen live a normal boy’s life… He made some attempts to attend kindergarten but he could do nothing but obey the doctor's rules: do not run, do not push, do not fight…and that’s why he even cannot play with his peers. So, Arsen had to learn quiet games. Luckily the boy has a bright and sharp mind, a good memory and is good at math. This year the boy turned six years old, but he still cannot go to school due to poor health conditions. To top it all, Arsen has got bronchial asthma and vision problems. It was decided in family council that next year Arsen would better go to the specialized school for partially sighted children.

Now Arsen’s family needs a strategic reserve of at least five ampoules of infusion factor. If this life-saving medicine were always at hand Arsen's mother wouldn't have to fear that her son will be unable to get it because of shortages at the hospital and insufficient money to buy it.

We ask all warm-hearted people to respond to this appeal for help. Arsen is a really charming boy whose biggest dream is enjoying such forbidden activities as jumping, running and tumbling… He had to become a grown-up early and miss the coolest “jumping” period of his life, as all these sacrifices are aimed at saving his precious life.

You can donate your money for purchasing this medicine or you can even buy this medicine by yourself and pass it on to Arsen’s parents, letting the members of the Happy Child Foundation know about it.

The residential address:

Zaporizhia, Ukraine

The telephone number of Ljudmila – Arsen’s mother: +38 (097)460 05 12

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