The doctors all blamed on prematurity and said, “What do you want from this child?” Mom has done a lot of specialists, and Katya was diagnosed with spinal muscular atrophy. She could neither stand nor walk, but intellectually behind peers, and through regular classes with specialists of children’s palliative service “Mercy” attending school and graduated from the 2nd class. Under constant surveillance service are 50 children with different diseases, including SMA.
- A “hole” in the heart of the operation at the expense of the parents
- “He was lying on my shoulder, like a whip, and didn’t even cry”
- 9 years Bob went into convulsions of epilepsy every day
- “He only reacts to pain.” in 5 years, Adam is not sitting, not walking, not talking
- To close the “gap” in the spine is possible, but the treatment is worth half a million
Children’s palliative mobile service “Mercy” appeared in Moscow 7 years ago as a joint project of the Orthodox service of assistance “Mercy” and the Martha and Mary convent. The project works on the basis of the Marfo-Mariinsky medical center “Mercy”. Doctors, nurses, instructors, physiotherapists, nurses, psychologists, social workers, a priest regularly visit families to help them cope with serious illnesses of children.
The doctors said: “What do you want from this child?”
Kate, one of the wards of the service, the doctors diagnosed a little over a year and a half. The girl was born premature. And the first days of his life spent in intensive care. “When this first crisis had passed, the doctors asked me how to call a daughter. I looked at her “natural” Katya! It was long-awaited, begged the child. Remember that time there was one series about Gypsies – “Carmelita”. As soon as Kate heard the music from the film, immediately began to sing along and swing handles. I’m still thinking: “Where did she get it?” She’s on the TV not paying attention, even cartoons are not watched. But the music I reacted…” – says the mother of Olga.
At some point in the development abruptly went backward. Katya has ceased to roll over, weakened, worse keep mind. The doctors all blamed on prematurity, said: “What do you want from this child?” Olga has done a lot of specialists. The result was the diagnosis – spinal muscular atrophy – to a disability. While intellectually Kate not far behind from her peers, and she has the same interests as any girl her age.
SMA is a rare genetic disease of the nervous system, which affects muscles. They do not receive signals from nerve cells in the spinal cord and cease to function. It is also called disease of motoneurons.
Now kata nine. Kate can neither stand nor walk. To play with her younger sister Ira, she can only sitting in a chair. Instead of dolls both love cars and trains. Like cartoons about robots and rescuers.
“Girls I have some “laprincesse”! Playing them is a boy, – says Olga. – General character of Katya’s solid, commander. She’s bossy younger sister: “Ira, do not go there! Ira, don’t touch it!” She kept control. And I shouted: “Mom, Ira there paint took, now she’s all dirty!” Or: “Mom, Ira clay got”. Or: “Mom, Irina is trying to somewhere to climb!” And my mother runs around the apartment there and back. Katya in this regard is not to be messed with”.
When Ira was born, lying and constantly demanded the mother, Kate was very jealous. Now they play with pleasure. Get along well. With Irina Katya cheered.
To remove fears and meet Baba-Yaga
Learning about the field of children’s palliative care service Mercy, Olga decided to seek help. Katya put on record. The house began to come specialists. Free.
Any changes in the status of Kati keeps track of the pediatrician service that specializiruetsya on such diseases. The nurse learns to care for the child. “Playing therapist “took” a lot of psychological problems.
For example, the child had unfounded fears that the mother will leave and not come back, that Kate somewhere away from us, – says Olga. I remember a play therapist brought huge sheets of paper and they drew her hands and paints. First Kate chose brown, black and dark blue, and already after a few sessions on the sheet appeared bright splashes of all colors of the rainbow. It struck me that the fears can be removed with the help of picture!”
But most of all Kate likes physical therapy sessions. The instructor first makes a gentle massage on the warming of all the muscles – 5 to 10 minutes. And then in the form of a game with kata they perform various exercises. Develop hands, feet, pull back. “Kate the whole day sitting in a wheelchair, – says Olga. – This leads to the fact that all of the hip joints “ride” is and dislocations, and subluxations. All the movements become very painful. His knees almost unbent. The child twisted, squeezed. You need to engage regularly”.
All classes are held in the form of a game. Instructor Katya before Baba Yaga fishing, and fly into space, and the car ride. Kate is looking for the imaginary gas pedal and brake, turns the steering wheel while keeping your back collapses. “The most unusual from what I have seen is when Katya Baba Yaga cooked soup of the toadstools, and then married her for Koshchey Immortal gave, – says Olga. – From the exercise physiologist of extraordinary flight of fancy. Without this children in any way. All cartoon and fairytale characters are involved”.
SMA is a progressive disease. All the muscles gradually weaken. Very important regular classes. Pay massage courses are expensive, to pay Katina family with two children, where one dad just can’t do. In April Katya had a surgery on his right hip and knee. Still persists in the joints stiffness.
“If Katya in one location was more than an hour lying or sitting, before it is moved somewhere else, you need to first straighten-bend your legs, move them and only after that it to turn over, to shift. It is still very painful,” says Olga.
Exercise physiologist Kate visits every 2 weeks. Checks the condition of the girl, adds some new exercises. He says what to pay attention to. In addition, every six months a service is held daily rate of 13-15 gymnastics courses.
With classes finished 2 nd class
Without regular exercise the quality of life of the sick child will begin to deteriorate rapidly. This is only possible in this case, the treatment. It can not save her, but can slow down the progression of the disease, relieve its symptoms and manifestations.
“In the absence of physical activities of no educational process or development of the child does not have to speak, only the survival and care. But Kate is now studying. She finished the second class of a specialized school, fully adapted for wheelchair users. Katia is making progress, the teacher praised her. Without the palliative care service we can,” says Olga.
Of the 50 children who are under constant surveillance service, more than half need the help of an exercise physiologist. The annual remuneration of the instructor is necessary to collect 628 554 rubles. Fund “Orthodoxy and the world” helps children visiting palliative service “Mercy” to make life easier for terminally ill children. Help can you by donating any amount.
Go to the page collection at the Foundation’s website
Photo courtesy of the Orthodox service of assistance “Mercy”