Dear friends,
The girl about whom I am going to tell you this time is a well known to you. She is seven-year-old Sasha, and I have written about her in some of the previous newsletters of MUCH. Sasha has a rare disorder – arthrogryposis. This congenital disorder causes multiple joint contractures. Sasha has one of the most severe cases of this disorder. It impairs her cardiac and respiratory function and causes pain in her chest and back.
Sasha has become very close to my heart. Today Mark and Sasha are very good friends. It is funny to watch when Mark tries to speak to Sasha in Russian. Not understanding him, sometimes Sasha asks me, “Chto on skazal?” That is for “What has he said?” Every time when we visit Sasha, she demonstrates her new skills in Math, Russian and in English. Her eyes sparkle every time she shares her dreams with Mark about her future. This little girl has become very popular in many countries of the world thanks to activities of MUCH. Sasha’s days have changed a lot since MUCH touched her life. After my previous stories about Sasha, many people are waiting to hear about the decisions of the doctors. I hope my article will answer all of your questions.
It was in a hall of the policlinic where Mark and I met Sasha and her mother Natasha for the first time. They were waiting for the masseuse to give Sasha a massage. I was struck by Sasha’s disability because I had never met such a person. I was very sorry for this girl and especially her mother, who looked very sad. After Sasha’s massage, the masseuse told us about her disorder. She told us that there is hope for children with such rare genetic disorder – this hope is a set of operations on bone joints. The masseuse told us that the cost of the operations is very high. I remember that at that moment there was distress in my heart, “Why can’t the government help Sasha and other children with this disorder? There should be a solution for this situation.” These questions had been in my mind until we visited Sasha and her mother at their home, in the end of last summer. Looking at the girl, it was difficult emotionally for me to translate the conversation for Mark and Sasha’s mother. It was at this time that God moved my heart to ask Mark if MUCH could help Sasha beyond the massage program.
Some months later, in October 2010, Sasha and her mother flew to Israel where she was examined by specially qualified doctors. This examination happened only thanks to people who helped this family with finances. The total cost of tickets, boarding, and examination in the Israel clinic was $3000. It was a very important assessment for Sasha. This was the first time that doctors who specialize in arthrogryposis examined her. Sasha and her mother came back from Israel very encouraged. The doctors said that they had successfully operated on people with the same disorder as Sasha’s, and they promised to send the mother results of their decision about the time for Sasha to be operated on and the cost of the operation. Their results came a number of months later. It was a big task for the doctors to come to one decision about the scheduling of the first operation for Sasha. They say that the best time for Sasha to be operated on will be in two years because of her bone growth process. The first operation should be done on her chest because there is a danger for her life. The concave bones of her chest press on her lungs and heart. The cost of the operation is $65,000. Sasha’s mother is investigating the prices in other clinics in Germany and Russia where doctors perform this operation. Natasha is going to connect with these doctors using internet Skype communication system, E-mail, and the phone. She wants to get as much information as she can about the possibilities for her daughter’s treatment.
Thinking of Sasha’s life and of the changes that have happened to her in less than a year, I am sure that for this little girl our meeting in summer was the turning point. She is the same physically, with the same disorder, but her heart is different – it smiles because in it there is a big hope for physical changes through operations. Sasha seems not to be afraid of operations and all kind of difficulties that may be connected with the operations. She lives only with one dream, to be like other children who can walk to school by themselves. Everyone who sees Sasha wants to help her. If God has put it on your heart to help Sasha, click on ‘Help Sasha,’ also at the bottom of the home page. MUCH has started an account in Sasha’s name for future expenses associated with her surgery.
Until next time,
Ira
