Girl with spina bifida finds strength through faith
When during pregnancy Uzlipat«s mother heard the diagnosis «spina bifida», it seemed the ground fell from under her feet. Doctors warned: the case was complex, with cautious prognoses. But the parents decided immediately: the child would be born, whatever path lay ahead. Ten years have passed, and today Uzlipat from Snezhnogorsk is an example of strength, kindness, and perseverance. She walks independently with braces, studies excellently, receives awards, and dreams of becoming a pediatrician.
Beginning of the Journey
«Uzlipat is my first child,» the mother says. «Now she is ten years old, she studies in fourth grade, her photo hangs on the honor board. She is a very smart, independent girl. She walks by herself – with braces, but she does everything herself.»
Every morning the mother accompanies her daughter to school – she helps with the heavy bag, and after lessons she meets her. But at school, Uzlipat is completely independent.
The family lived in different cities: the husband is in the military, and service required moves. «We changed schools twice: first we lived in Korzunovo, now in Snezhnogorsk. Both there and here we were received very warmly – no problems with children or teachers.»
Diagnosis and First Trials
The pregnancy proceeded calmly until the second screening, when doctors spoke alarming words. A week later, a medical council in Murmansk confirmed the diagnosis.
The diagnosis «spina bifida» means it is a congenital spinal defect where the spinal cord, its membranes, and/or fluid protrude through a gap in the spine. Unlike acquired intervertebral disc herniation in adults, it is a pathology of central nervous system development. Symptoms can vary from external manifestations (a hernia sac) to neurological disorders such as limb weakness, sensitivity impairments, and pelvic organ dysfunctions.
Medics suggested an abortion.
«I am a Muslim, and if there is no threat to the mother«s life, abortion is not permitted. Therefore, the question of termination did not even arise. My husband and I immediately signed a refusal and left.»
The girl was born at the V.A. Almazov National Medical Research Center in St. Petersburg. Mother and daughter spent a month in the hospital: doctors decided whether to place a shunt. In the end, the operation was not needed. «When Uzlipat was one and a half months old, we were discharged. But no one explained where to turn next. I knew nothing, there was no information.»
Half a year later, chance helped: another pediatrician told them about a rehabilitation center in Apatity. The family started going there every three months. Thus began the long path of recovery.
When You Find Your People
A real discovery was the Spina Bifida foundation. The mother learned about it when Uzlipat was three years old.
«Before that, I thought: I have one such child in the whole country. But it turned out, there are many of us and they help us. That same day I was added to the parent group, and from this our real movement forward began.»
The foundation gave not only knowledge but also confidence. «They told us what to pay attention to, which centers exist, how to get rehabilitation under compulsory health insurance, and helped legally. When health questions arise, I always turn to them – they advise, direct, and help.»
Moreover, a big role is played by the «Trips for NGOs» program of the Yandex foundation «Help Nearby», under which beneficiaries of charitable organizations can travel for free by taxi to medical institutions, educational institutions, kindergartens, and rehabilitation classes.
Moving Forward
Over ten years, the girl has undergone more than ten operations. In summer, the family went to Turkey, where Uzlipat had a spinal cord stimulation device installed.
«Then our husband«s friends helped – they organized a fundraiser. In ten days, they raised 3.5 million rubles (approximately $35,000 at current rates)! It was incredible. After the operation, there is already a result – small, but there, and I believe it will get better.»
Despite difficulties, Uzlipat remains active and curious. She loves school, attends clubs, and participates in olympiads and conferences.
«She especially likes drawing and music. She says: ‘I can do everything,’ and I believe her,» the mother smiles.
Family, Faith, and Support
«Faith and my husband«s support helped me. I try not to get nervous and not focus on the bad. What I can – I do, the rest I leave to God.
There are always good people – doctors, volunteers, just caring ones. Therefore, I never had depression.»
Next to the mother was always the family. «The first months my husband helped, then parents, mother-in-law, aunts joined. I was never alone. Now we have three children, two younger sons. We are all together – and this is our strength.»
Finances, of course, require effort. «I do not work, everything is handled by my husband. But the main thing – we manage. After all, there are no unsolvable problems if you believe everything will work out.»
Dreams and Plans
Uzlipat dreams of becoming a pediatrician. «Probably because she herself interacts a lot with doctors and wants to help children,» the mother says.
The girl dreams of walking without braces. But at the same time, she does not compare herself to others and does not complain. «She says: ‘Let them have everything good, and I will have too.’ I really like that in her. She is kind, strong, and fearless.»
