"Wanting to ensure children don't die," a special forces soldier becomes a rehabilitation therapist to help his daughter.
3Vasilisa is now seven years old
Photo: Olga YUSHKOVA. Go to the Photo Bank of KP
Spouses Mikhail and Albina Mulikhin live in Yekaterinburg and are raising their 7-year-old daughter Vasilisa. In the past, 41-year-old Mikhail was a special forces soldier, and since 2022, he has become a rehabilitation therapist.
He entered the medical field to help Vasilisa, who suffers from a rare genetic disorder known as merosin-negative muscular dystrophy (a defect in the LAMA2 gene). Due to this same condition, the Mulikhin family lost their son in 2015. Six-year-old Kirill died in his parents' arms.
KP-Yekaterinburg learned about the Mulikhin family's story.
WORKED AS A TRAINER IN SERVICE AND COMBAT TRAINING
Mikhail speaks little about his service, explaining that it's prohibited by law. From 2005 to 2018, Mikhail Mulikhin served as a trainer in service and combat training at the Federal Penitentiary Service.
- I worked in Pervouralsk, sometimes we trained at the OMON base. Then the leadership accommodated me, allowing me to transfer to Yekaterinburg at the Federal Penitentiary Service. Occasionally, we would travel to other cities for three months, - recalls Mikhail. – I still keep in touch with former colleagues; we communicate on social media. However, I wouldn’t want to return to service, so I have no regrets.
Mikhail has two degrees in physical education – from a pedagogical college and an institute.
4The Mulikhin family does everything to ensure Vasilisa has a happy childhood
Photo: Olga YUSHKOVA. Go to the Photo Bank of KP
REMODELED THEIR APARTMENT TO WORK WITH THEIR SON
With the arrival of their first child in 2008, specific medical terms entered the family's life. Due to his condition, Kirill could not move his arms and legs and did not develop like other children. Doctors were puzzled and could not reach a definitive diagnosis. Meanwhile, the parents fought for their child's life as best they could.
- After my main job, I volunteered at a doctor's office to gain experience and learn. The doctor taught me how to properly perform exercises and assist Kirill. I traveled to Moscow with my son, where he underwent a muscle tissue biopsy. They determined that it was a myopathy of undetermined etiology based on the markers. At that time, Kirill was six and a half years old, - recalls Mikhail. – We had to remodel the apartment and install exercise equipment. We lived on the tenth floor, and moving a wheelchair here was not convenient.
5Kirill was not even seven when he passed away. Photo: Mulikhin family archive
THE BOY DIED IN HIS PARENTS' ARMS
Shortly before his death, Kirill underwent surgery on his hip joints due to constant pain. On Easter 2015, the 6-year-old child passed away in his parents' arms.
As he recounts those events, Mikhail's eyes fill with tears.
- They were planning to remove his cast in a couple of days. Albina, as usual, played with Kirill, laid him down on the bed, and he started turning blue before our eyes, - Mikhail sighs. - I performed artificial respiration and chest compressions. The paramedics arrived, and we were pushed aside so we wouldn't interfere with their work. But they couldn’t save Kirill. We think that the surgery and respiratory issues contributed to his condition. After our son’s death, we moved to another apartment.
FOUND OUT ABOUT THEIR DAUGHTER'S DIAGNOSIS WHEN SHE WAS 4 MONTHS OLD
6Vasilisa is a cheerful and smiling girl
Photo: Olga YUSHKOVA. Go to the Photo Bank of KP
In 2017, Mikhail and Albina learned they were expecting another child. Perinatal studies showed no results regarding any deviations or genetic issues. The correct diagnosis was only made when the baby was four months old.
- I understood from birth that Vasilisa was different from other children. I kissed her and said, “Well done, you chose the right family. We know what to do with you,” - says the girl’s mother, Albina. – We didn’t wait for any quotas for genetic testing; we paid for it ourselves. It confirmed merosin-negative muscular dystrophy.
FROM SPECIAL FORCES TO MEDICINE
In 2018, Mikhail completed his service and was able to fully dedicate himself to helping Vasilisa. Additionally, the former special forces soldier was eager to assist other young patients with congenital pathologies. Therefore, he readily began studying a new profession.
- Our classes were held from 3 PM to 10 PM, two days a week, for four years. I attended conferences and obtained additional education in rehabilitation and orthopedic pathologies. I began working in a children's hospice as a massage nurse. I continue to do that to this day, - Mikhail clarified.
7Just to lift her arms, Vasilisa needs to exert considerable effort
Photo: Olga YUSHKOVA. Go to the Photo Bank of KP
Albina also decided to help children with similar pathologies and disabilities. In 2019, she founded the “LAMA” assistance fund. Albina advises parents on how to raise such children and what examinations can help establish the correct diagnosis. Mikhail also provides consultations for parents whose children suffer from myopathy.
ATTENDS A REGULAR SCHOOL
Thanks to timely and regular training, Vasilisa can do more than other patients with similar conditions. Some children with such pathologies do not live to be seven years old and cannot stand independently. Merosin-negative muscular dystrophy causes weakness in all muscles. Merosin is a protein involved in the structure of all muscles. If it is deficient or absent, they deteriorate. Without proper care and support, deformities of the musculoskeletal system and severe disability occur.
However, Vasilisa can lift her arms up with clear instructions from her father. Although it is not easy for her, she tries her best.
- Regarding Vasilisa, the doctors did not provide us with any forecasts either. But we know of cases where people with this condition live beyond 50 years. The genetic defect causes weakness in all muscles, including the large musculature, back, and intercostal muscles. Such children cannot sneeze or cough like we do. Mucus does not clear from their systems. Consequently, even a simple runny nose or cough can lead to a fatal outcome, - Mikhail explains.
Despite this, Vasilisa attends a regular school and even performs on stage there. She particularly enjoys playing the flute. Playing wind instruments is beneficial for her condition as it helps increase diaphragm amplitude.
- Today I was on stage as a snowman, - Vasilisa smiles. - They even put a little makeup on my cheeks, - she happily adds, her cheeks flushed.
8The verticalizer is an essential part of the sessions
Photo: Olga YUSHKOVA. Go to the Photo Bank of KP
The Mulikhins dream of having more exercise equipment at their disposal. Unfortunately, they cannot afford many of them at the moment – the prices are steep.
Currently, Mikhail and Albina continue to gather knowledge about the illness, attending special events. They do everything possible to give Vasilisa a childhood like any other child.
- We want other children not to die. This helps us stay sane, - shared Albina.
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