Babushkina Anastasia turns year old. Three years ago, she 8 years old this was diagnosed with hereditary motor and sensory neuropathy (neural amyotrophy): Charcot-Marie-Tooth disease with severe distal paraparesis, amyotrophies, and a progressive course.
Doctors diagnosed her, but, like no one could say for sure where to treat this disease. Anastasia's mother repeatedly consulted with doctors, but time passed, and there was no real help for her child. Unfortunately, in Ukraine, there are no centers that study and treat this disease. Nastya and her mother visited the Odessa Genetic Center several times and went to Kharkiv (they took tests at the Medical Genetic Center at the Kharkiv Regional Hospital), but this did not yield any results. The child was treated with a combination of medications: Iodomarin
100, Aminal, Glycine, and Actovegin. Nastenka underwent rehabilitation treatment at the charitable foundation «Future» (Home with Angel): electrophoresis, back and leg massages, exercise therapy, and regular swimming.
Unfortunately, as doctors explain — this disease is not treated in our country, and its further development is impossible to predict.
While constantly following news in this area, Anastasia's mother learned that in America there is an association dedicated to studying this disease — Charcot-Marie-Tooth Association (CMTA). According to the latest data from this association, American scientists have developed a drug that can halt the progression of the disease. But, unfortunately, Nastya's parents don't have the funds to examine and treat their child in the USA. They also don't have any relatives who could help.
As of Nastya's condition is currently stable. She still has no Achilles or knee reflexes. She walks on her toes and tires very quickly after long walks, is unable to stand on her heels, and is afraid to climb up and down stairs without support. Scalloped posture has worsened. — Sitting for long periods at a desk is taking its toll. Since this disease is hereditary, people with close relatives with
neuropathy are at risk. In order for Nastya to receive the correct treatment, the entire family needs to be examined at the Medical Genetics Research Center of the Russian Academy of Medical Sciences in Moscow. The foundation paid 20000 UAH for the examination, which will take place on 10 June.
Nastya's mom and dad are struggling with difficulties and adversities themselves. They try not to give up, not to give up, and do everything possible to ensure their child lives a normal, unrestricted life, but the disease is progressing, and they simply need a more comprehensive examination of the child and treatment in the USA, for which, unfortunately the parents do not have the funds, and they hope for the help of caring people. We believe there are many such people, and together we will help Nastenka.
Thank you to the advertising agency «Beaumonde» for their ongoing assistance in placing social advertising. Since 1 May 2013 in Odesa, billboards have been installed with information about Nastya.
From Nastya's mother's letter:
07.02.2014
About Nastya's condition — 17 In January, following a flu-like illness, our condition worsened. We immediately consulted our neurologist. In addition to Actavegin and our other regular medications, the doctor prescribed Magne B6 and Noophen. We are still taking these medications, but unfortunately, there is no visible improvement. The instep has increased, there are no reflexes, and there is a tic in the upper face and arms, a spastic gait, unbalanced posture, and scoliosis of the 2th degree.
We are constantly registered at the Regional Children's Hospital (ODCH), at the Odessa Regional Hospital (Zabolotny 125. Dr. Kubarev A.A.), we have monthly checkups, and we are constantly 3 at the rehabilitation center once a week «Future» (Home with an Angel). We create all the conditions for the child's normal life and development - we buy special shoes, because ours, which are provided free — are oak and heavy, and a child like Nastya requires lightweight shoes with thick, soft soles that don't press anywhere.
With respect and gratitude, Inna.
12.12.2013
Hello!
I'm writing about Nastya's condition. — 21We completed another course of medication on November 1st. She's feeling stable. I monitor her legs and back every day. — She wears an orthopedic brace on schedule, and I learned to massage her feet myself. — Now before bed, I wash her feet with an infusion and massage them. She's stable, but unfortunately, this stability can be very insidious. — The disease develops slowly and imperceptibly. Everything seems to be the same, but then you notice that something has changed. 20We're going for a routine checkup and another course of treatment on December 1st. Thank you so much!
01.11.2013
From 20 October, we began another course of medication, which Continue until 21 November: Actovegin 200mg No.50 (2 pack.) -720 gr., Cardonate 250mg No.50 (1 pack.) -54,40 gr., Aminalon O,25 mg No.50 (2 pack.) -35,00, Iodomarin 200m No.50 (1 package)-32,50, glycine No.50(2 package)-31,50.
We also completed a course of massage 10 sessions and continue to go to Dom s Angel for treatments. The child is doing well; her condition is stable so far. Thank you for your support.
14.10.2013
Hello, I'm writing to you about Nastya's condition. She's constantly catching a cold. We've been taking antiviral medication for over a month, but the school, which doesn't have any heating and the children who come to school with colds (parents have nowhere to put them), are making their presence felt. Unfortunately, due to her cold and her busy schedule (Nastya attends music classes and the Angel House for treatments), we weren't able to schedule a massage course from 1 October, but we've rescheduled it for 26 October – the start of school holidays, but we'll definitely schedule it!
Nastya's overall condition is stable, but her feet have become very cold, something I haven't noticed before. Our neurologist says it could be a progressive illness. I've started massaging her feet myself, rubbing them with alcohol tincture and loy (goat fat). I hope this will help; these rubs are also recommended for colds. I'm gathering information about our illness bit by bit, and I learned that a Belgian university and the University of Chicago are testing a drug that could help us, but unfortunately, they're only testing it on mice, and the path from mice to humans is a very long one. I hope science will complete this journey soon.
Thank you for being with us, all the best!
25.09.2013
Hello, I'm writing about Nastya's condition. After rehabilitation, we're continuing the medication course. — Cardonate, Actovegin, Aminalon. A massage therapist will be working with Nastya starting from 1 October. Thanks to the sponsors, we can now pay for the entire massage course. From 13 to 22 September, Nastya suffered a severe case of the flu, which was accompanied by a sore throat and acute food poisoning. — The doctors said the infection had spread to her stomach, and she kept vomiting. 3 The body is very weakened, but thank God it's all behind us. We're now taking vitamins intensively and taking care of ourselves. Nastya has already started school this week.
Thank you! All the best, Inna.
30.08.2013
Good day to you! From 26 August to 6 September, we've been undergoing a rehabilitation course at the House with an Angel: hydromassage, individual exercise therapy, a loco-system, computer-assisted orthocorrection, and additional medication, currently following the old regimen (we've already purchased the medications): cardonate-54,40 gr, aminalon (2 pack of 17,50) - 35gr, iodomarin - 32, 50, glycine (2 pack of 15, 75) - 31, 50, and the most expensive — actovegin, We bought 2 packages ( 360 gr. - 720gr.) because Nastya's legs hurt a lot after classes, even though the activity is minimal. This medication helps, so we're taking it intensively. But our neurologist will give us additional medications after the course, we'll see what she prescribes. I'm not very fond of pills, Nastya already has allergies, and we need at least a month's rest.
The child is, of course, very tired, on her feet all day. — from 9-10 am to 5-6 10 pm, and without proper nutrition, we snack on sandwiches or go to Zharyu-Paryu (they don't feed residents of Odessa, only visitors). Also We're trying to get into the 6 boarding school, even though we've been rejected again, but Odari N.V. is still fighting for us, and I hope everything will work out.
With respect and gratitude, Inna.
11.08.2013
Good afternoon! Today Nastiusha and I came back from her grandmother's (from the Kharkiv region); she found the journey hard - the heat, an open-plan carriage, a dirty toilet, we barely made it home. The child's condition is stable, but I notice a characteristic gait in her - a stork's gait; the arch of her foot has risen a little - we can see it by her sandals (the buckle now needs a wider setting); there are still no reflexes. Right now we want to go to the sea, since we cannot manage a holiday away, and from 26 August a new course of rehabilitation begins for us - medication and treatment at the «House with an Angel».
With respect and gratitude, Inna Babushkina.
15.07.2013
Good afternoon! I am writing to you about Nastiusha's condition: at the moment it is stable, on the 17th we finish the course of medication accompanied by exercise therapy and massage (our grandmother gives it to Nastia herself). The child feels well, in the village she breathes fresh air, eats home-grown fruit and vegetables, sunbathes, swims in the pond and helps her grandmother about the house. Her parents have kept bees especially for Nastia, because I found out that royal jelly is very good for patients like her; it is, admittedly, very hard to obtain, but let us hope that we will manage.
Sincerely, Inna Babushkina.
23.06.2013
From Nastya's mother's letter:
Hello, dear «Little Bee», My husband and I just returned from Kharkiv today. We left Nastya with Grandma, where she's undergoing another course of medication. Grandma is also doing physical exercise with her and helping Nastya get stronger, as she's been getting sick a lot lately.
Thank you again for your help, happy Trinity Sunday, and we wish you happiness and health, the Babushkin family.
11.06.2013
Good afternoon, our dear foundation. «Little Bee» We had a safe trip to Moscow and had an appointment with A highly qualified genetic neurologist and I had some tests done.
Unfortunately, the doctor confirmed the diagnosis of — Maria-Charcot-Tooth syndrome, but the final conclusions will be available in 2 weeks. By then, the test results will be ready, and we'll know the type and subtype of the disease and what treatment recommendations are available. Although the doctor warned that this diagnosis is incurable, it can be treated symptomatically, not neglected, and the child's health should be constantly monitored, which is what I'm trying to do.
22.05.2013
At the moment, Nastya's condition is stable. She also has no Achilles or knee reflexes. She walks on her toes and tires very quickly after long walks, can't stand on her heels, and is afraid to go up and down stairs without support.
It has worsened. Scalia posture — Sitting at a desk for long periods of time is taking its toll.
