Help Little Akmal and mom
Hello everyone, I am writing this because I want to ask for your help for a beautiful family in much need, Dina and Akmal Zhangaziyeva.
Dina is a courageously strong mom of an equally courageous beautiful 7 year old boy name Akmal. Dina and Akmal are originally from Kazakhstan and have been living in Boston for 3 years because Akmal needs very specialized treatments in order to keep him alive. Akmal has suffered from the first day of his life and his treatments have taken him to Israel and India and now the United States.
Akmal suffers from an incurable condition called Gastroparesis caused by intestinal pseudo-obstruction, which is a disease that mimics blockage in the intestines. Akmal at 7 years of old wears a permanent (for the rest of his life) colostomy bag bag and G tube which help him eliminate and assist his GI tract. That is why Dina and Akmal are in Boston, to be under the care of the world's foremost expert on gastroparesis, Dr. Nurko. Dr. Nurko is pictured above with Akmal.
Little Akmal also suffers from Moyamoya, which is a rare incurable progressive disorder caused by blocked arteries at the base of the brain which causes people to have seizures and strokes. Akmal has had several strokes already and he has had brain surgery to allow for better blood flow to reduce the risk of more strokes. He still suffers from seizures. Akmal will also need kidney transplants one day due to chronic kidney disease (CKD stage III). Akmal spends a lot of time at Boston Children's Hospital, sometimes he is admitted 1-2 times per week. At 7 years old, Akmal has had 10 surgeries for his gastrointestinal, brain and bladder issues, with more on the way.
Dina is a single mother and is in the United States alone with her young son and doing her very best to stay strong and optimistic for him, in a new country. But to be honest she is very scared, Dina has been granted a work permit, unfortunately, because Akmal’s health can suddenly turn for the worse, and he has to be rushed to the hospital, she has to miss work to care for him, and it is why she has lost two full-time positions. Her funds have run out and the only money she has is from odd jobs as a nanny, pet sitter and cook. On top of all of this Dina and Akmal need to find a new place to live. They live in an area near Boston Children's Hospital. She does not have a car, and is not able to rent an apartment because she has no credit history, co-signers or a full time job. She rents one room in someone’s apartment, and unfortunately the owner is selling the apartment and she has to vacate by the end of December.
The thing Dana wants the most is to be able to support her son, and to be able to rent even a small studio apartment. Dina desperately wants to find a job with a flexible schedule so she can take care of her son. She knows that she could do this if she had a car and was able to work as an Uber driver where she could make her own hours.
If you can help in any way towards buying a car so Dina can start to earn money to support Akmal, and to help her with her move to a new apartment or room, please do so, I know how grateful Dina and Akmal will be and how much it would change their lives.
Dina is an extremely bright woman and has a bachelors degree in mathematics and a post-graduate degree in finance from universities in Kazakhstan.
If you can help financially please consider donating, and if you know of an apartment or room situation in Boston near Boston Children’s Hospital, please let us know.
Thank you, and God bless!”
Akmal got his new GJ tube and we started to feed him yesterday - 5 cans of pediasure peptide 24/7. I bought him small and light backpack to carry his pump and bag with formula everywhere. He loves it!
Hope it will work and he will start to gain weight and height.
His GI doctor Samuel Nurko saw all my photos of what we usually have when obstructions appear. We empty his stomach through the G tube and lots of staff is coming out. He is in constant risk of dehidration what can cause stroke. Dr.Nurko will change Akmal's G tube to GJ and we will start to feed him slowly with pump 24/7. Dr.Nurko told me that stomach is almost not working at all. Using GJ tube will let us know how well his intestin is able to work. If nothing will work to help him to gain weight he will come back to discussions about TPN (parentheral nutrition - through central line).
After that we had an appointment with psicologyst. We started to visit copin clinic after Akmal faced bulling at school and told me that he thinks it is better not to live with all his pain. That happend in october and that broke my heart. We met many people from that days and he feels much better now. But we have more work and will continue this visits.
I hope things will get better for my son and he will be as healthy as all people around us!!!
Thank you again and again all our friends for your support, donations and kind words!!!