| Friday, 08 February 2019 00:00 |
 Arthur's TreatmentThis campaign is on behalf of Kyrgyz singer, Nurbek Savitahunov and his wife, Kyrgyz actress Al’bina Beyshembieva. Regional restrictions keep them from creating their own crowdfunding page, so they’ve asked me to help out. All monies raised by this campaign go directly to them.
Our son Arthur was born in early 2015. A fast learner, our firstborn child made myself and his mother, Al’bina, endlessly proud. At 24 months, he could count to 30 and read the alphabet through. He quickly grasped geometric shapes I never knew existed. Our little boy easily understood and spoke basic phrases with us in both Russian and English. He could sing along to any melody after hearing it once and, to our continual delight, he danced like no one was watching.
Around the middle of 2016, however, we began to notice striking changes in his behavior, including a distressing emotional regression that doctors’ prescriptions could do nothing to counter.
He began to be ill more often and threw regular temper tantrums. More alarming, he clearly suffered from insomnia. As weeks passed, our Arthur began to exhibit new and strange behaviors including self-aggression, freezing in place for long periods of time, avoiding eye contact with us in spite of repeated entreaties, and, most frighteningly, he stopped responding to his name.
Arthur’s physical body also became compromised, as movement and speech that before had been clear and understandable in the style of a normal toddler stopped making sense to us. He would trip on flat surfaces, run into walls, lie on the ground in public, stuff anything into his mouth that he could get his hands on and not notice that his body had voided urine or feces.
Our little boy soon became unable or unwilling to focus on anything or anyone that was not related in some way to numbers or alphabets. He stopped being aware of his surroundings and ran away from us without looking back, without any sense of fear or self-preservation.
We first suspected that Arthur had Autism Spectrum Disorder (ASD), but several doctors insisted that, despite his peculiarities, we nonetheless had a healthy growing boy.
Arthur
All that changed in year 3, when Arthur was diagnosed with atypical autism — ADHD — indicating early organic damage of the central nervous system, intolerance to gluten and dairy.
We immediately began intensive rehabilitation, including courses in art therapy, ABA therapy, adaptive physical education and a strict gluten/dairy-free diet. Taken together, the regimen we embarked upon in 2018 to treat our son, including a move from Moscow to southern Russia, where these services are much less expensive, would cost us $13,000.
The new regimen has shown results, as in less than a year Arthur has learned to use a child’s toilet, respond to his name and simple questions, occasionally make eye contact, begin to read, imitate movements and sounds, dress, brush his teeth and put together simple sentences of 2 to 3 words.
But other ASD traits remain and Arthur:
Arthur with one of his doctor
It has been explained to us that, for children with his condition, the ideal age window to develop coping skills to adapt to the challenges of adolescence and adulthood is 5 to 6 years. Arthur turns 4 in March 2019, and we are afraid that he will not get another chance if we miss this window of opportunity to deepen his regimen of treatment.
We are in a race against time. We are blessed to have Arthur as he is, but our goal for 2019 is to make an enormous push to help him receive the best treatment we can find.
With the assistance of networked professionals, we were made aware of a regimen of treatment for children with Arthur’s disabilities at a dedicated medical center in Moscow . The intensive 18-month course, including transportation, testing, thoroughgoing analyses, equine and swimming therapies will cost the equivalent of approximately $45,000.
As working parents, we do not have the ability to lay our hands on this kind of money. Can you help us to help Arthur? It is through the kindness of friends and strangers that we can be able to provide Arthur with the kind of personal, intensive and effective care he needs.
Thank you, Nurbek & Al’bina
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