Thursday, February 10, 2011

Farewell, Sultan, You Will Not be Forgotten

 Young Sultan from Kazakhstan was not able to access the medical treatment he needed for Prader-Willi Syndrome.  There was no parent support group, very little medical knowledge and Sultan's condition gradually became worse over the last year.  It is with great sadness that we report that Sultan died on February 2nd this year.   Sultan's story was published in our Wavelength edition: http://www.ipwso.org/assets/pdfs/Wavelength-Nov-09low-res.pdf   page 9.

His family had only recently been able to contact IPWSO and through our medical consultants been able to learn about the syndrome.  Sultan was much loved in his family and his Uncle Kairat wrote to us to let us know of his passing.  He paid a wonderful tribute to his nephew, and will not mind that we share it with our PWS families world-wide:

Dear Friends,
My name is Kairat. I am Sultan’s uncle and an older brother of Askar [Sultan’s other uncle]. On Askar’s request I am writing this message as a tribute to our dear Sultan.
Last Tuesday 2 February,  my nephew Sultan passed away at the age of 18. He had a rare Prader Willi Syndrome. His mental/emotional development had stopped somewhere at the level of 5-6 year old child. We knew he would not live a long life but losing him at this time is heart breaking. Often Sultan was difficult and very stubborn especially with regards to food, sitting at the same dinner table with guests, and a few other things. His grandmother and primary carer had many difficulties with him. However he was such a special child in a body of a giant. He had body of a bear but a heart of a deer. Sultan sincerely loved little children and animals. When sitting at a play ground he would start talking to children of 5-6 years of age and would be so happy if they would talk back to him. Other parents would be wary of “this huge body mass” talking to their children and would eventually take their children away. Sultan was very sweet and gentle but was lonely at times as he was not understood by many and at times by his own family. Sultan had lived with us for 18 years and we all are grateful he has been a part of our lives. Without him our life would not be as meaningful and rich.
We tried to care for Sultan with genuine support of you all as a wonderful international family helping families everywhere in the world to deal with the Syndrome. There is no doubt we could have done better and Sultan would have lived longer. But we also know that Sultan had a gracious heart and he forgave us all for any inadequate care he received from us. Sultan was a true believer in the forgiving and loving God of the Bible. He genuinely believed in the saving grace of the Lord Jesus Christ. During his last days he was probably close to 200kg. He would sometime say that when Christ returns he would be given a new slim body and would be able to run like other boys! His words were so special! He is surely with God now as he had been the most sincere believer of us all.
My mother has told me of his last moments before he died. The way he was getting ready to meet his end was amazing. This is having very serious impact on us. Sultan was to a serious degree both physically and mentally retarded but somehow he knew he was dying. He was so sweet asking God not to take him yet as he had not seen his newborn cousin sister yet (my newborn daughter). As my mother was with him this night he asked her to call my sister (Sultan’s mother) to say goodbye to her. When she came he was too weak to say anything but just gently gazed at her for 10 minutes. A little earlier he was asking my mother to forgive him for being difficult to deal with. His last words were the words of Lord’s prayer (New Testament, Gospel of Matthew 6:9-13) which he knew by heart. He tried to say it two times but was too weak and could not finish. He then gathered all his strength and said this prayer in full once and then another two times. He then tried to sit but instead turned on his stomach and went quiet. He was breathing for a few more minutes before going completely quiet and loosing heart beat.
What was so amazing is how serious and clear thinking Sultan was in the last hours of his life. His last words were said out loud and my mother could hear them but they were addressed only to God above. Witnessing this moment was so remarkable that it could not be described with words. It was so real and genuine. That was his big moment and Sultan was so brave to face it the way he did. As his family often we did not understand him enough. We often did not take seriously his “childlike” thoughts about his life with God. But how serious was loving God listening to Sultan in his last moments. Sultan was “unfortunate and retarded” as far as this world is concerned but he was a very special and precious as far as God in Heaven is concerned. Sultan is not an angel, he is someone more special. Angels are not called children of God, but Sultan surely is a child of God. The reality of God in his death was overwhelming. I miss Sultan and want to see him. So I have to wait a little for my time to go. Until then I hope this would produce lasting fruit in our life and we would be “serious as to death” about the reality of God in this life and in eternity. In conclusion I would like to repeat the last words of our Sultan as they are very special to us.
Our Father who art in heaven,
Hallowed be Thy name.
Thy kingdom come.
Thy will be done,
On earth as it is in heaven.
Give us this day our daily bread.
And forgive us our debts, as we also have forgiven our debtors.
And do not lead us into temptation, but deliver us from evil. For Thine is the kingdom, and the power, and the glory, forever. Amen.

We will always treasure Sultan in our lives. His last moments are very special to us and we only share these with close friends and family. We thought of writing this to you because you have become such family to us. Again many thanks to you all. 
Kairat (Sultan’s uncle and an older brother of Askar)