There is nothing more devastating to a mother than to see your child suffer from a serious disease. For every mother who has heard these words “Your child has leukaemia”, it is a moment frozen in time and life-changing event. I experienced one such frozen moment today.
My father has been in hospital with heart problems recently. I made my routine call home this morning to ask after his health. My brother picked up the phone. He clearly seemed to have something urgent- something very important to say. After a few minutes of muttering and stuttering, after I had promised that I would not tell mum and dad, he told me the news. The news that made me freeze. My sister’s one and only son was diagnosed with severe aplastic anaemia- a type of blood cancer where a child needs urgent Bone Marrow Transplant.
I stood speechless as my eyes welled up in tears. In an instant, the flashbacks of all his childhood memories came to me. My nephew was so chubby as a baby and we all loved him dearly. My sister lived two doors away from my parents’ so my nephew grew up in our house mostly. My sister and her husband moved to Russia in 2011, just like thousands of low-skilled migrant workers from remote villages of Uzbekistan, up and down the country. They left my nephew with my parents initially but called him over in the summer of 2013. My nephew is now 12 and my sister could never have another baby after him. And imagine how you would react if you receive the news of your one and only son having a rare type of blood cancer; Imagine the pain you would feel; just imagine to go through the torturing thought that your son leaves this world before you….
I quickly put the phone down and called my sister in Russia. I wondered how she is coping with such calamity in a country far from home, with no family or friends around her? Just imagine going through pain with no support system around you. As soon as she heard my voice my sister broke down. I only said two words “I know” and we were silently crying to each other on the phone. No words, just pain.
Then she started telling me how difficult it has been. My nephew’s nose was bleeding throughout the night on New Year ’s Eve. He had frequent nose bleedings in the past month. The hospitals were closed due to holidays and my brother-in-law was waiting for payday. As low-skilled migrant workers, they do not qualify for free health care in Russia and use private doctors when needed. They finally took their son in to a small private clinic on 6 January 2014. The doctors took blood results and diagnosed him with anaemia. But he stopped eating and he could not walk and was in constant pain. They carried more blood tests and could not identify anything. Then it was decided the next day, on 7 January 2014 that samples from bone marrow should be examined. The results were devastating.
But, you will not believe, there is something even more devastating than this. The small private clinic was unable to offer any treatment to Aplastic anaemia and transferred my nephew to Yekaterinburg Children’s hospital of Oncology and Haematology. As soon as they found out that patient was from Uzbekistan, they refused to admit him completely. My sister and brother in law were told that the treatment for Aplastic anaemia is only offered to Russian citizens and they would not be able to pay for treatment privately. Then somehow they got hold of this Tatar lady who works at this hospital as a doctor. She interfered for them on the basis that they too were a fellow Muslim. My sister was crying- “It is only because of that lady my son lived the past 4 days. And I cannot tell which is harder- enduring to see the pain on my son or enduring the dehumanizing comments of nurses here. They throw all sort of comments at me not seeing that I am already half dead.” My nephew was discharged this morning. They could no longer keep him, even if we paid for his treatments. He is diagnosed with Severe Aplastic Anaemia.
They have sent me the test results from hospital. I was horrified by just looking at them. His bone marrow is not making enough blood cells for the body: red blood cells (RBC) to carry oxygen, white blood cells (WBC) to fight infection and platelets (PLT) to control bleeding. This is the result of my nephew’s blood cell count as of today:
|Results||Normal to have||Condition|
|White Blood Cells||2.33||4.5 – 13.5||severe|
|Red Blood Cells||0.92||3.8 – 5.2||severe|
|Platelets||18||142 – 424||severe|
|Haemoglobin||34||115 – 150||severe|
My sister and brother in law both left their jobs to look after my nephew. Now, my nephew continuously needs to have blood transfusion and medication until they find donor match for Bone Marrow Transplant. They urgently need money for: donor search, compatibility testing, donor harvesting, medical treatment, medication and medical supplies, my nephew’s home and day care etc. I think I have researched gazillions of websites today for help, support and funding. I am asking for donations from friends too. Please help my nephew to survive by donating via http://www.justgiving.com/nurillo
I have full faith in God that He does not burden a soul more than a soul could bear. I have full submission in whatever Allah has destined for my nephew. I also believe you can help him to live a little bit longer. So,please do not ignore this message. Whatever you give, may God accept it from you. Thank you so much for your help and support. I will keep you all updated.
Below are his full examination results including blood test and cell count results I obtained from Yekaterinburg Children’s Hospital of Oncology and Haemotology. The results confirmed that he has Severe Aplastic Animea and urgently needs Bone Marrow Transplant.