REFUGEE SUPPORT FUND MARHARYTA'S STORY
Any family that has a child with Duchenne Muscular Dystrophy spends its life in a constant struggle with the disease. Even before the war started the State didn’t provide Ukrainian families with full access to systematic treatment, social protection and full life support for their children. Since the outbreak of the war, it has become dangerous for everyone to live in Ukraine, but especially for those who have kids with Duchenne. No one knows where and when the Russian missile will hit next.
It should be mentioned that Duchenne Muscular Dystrophy is a rare orphan disease that causes progressive muscle weakness. It starts from the lower legs and spreads up to the heart and lungs. Duchenne patients usually start to use wheelchairs at the age of 12. To stop the progression of the disease they need constant access to the new drugs, physiotherapy, hydrotherapy, healthy nutrition, assistive technologies and inclusive education. Even a walk in the fresh air requires a lot of parents’ effort and time. They have to plan everything in advance and take care of many small details, because even one wrong step can lead to the child's fatigue and worsen his condition.
It should be mentioned that Duchenne Muscular Dystrophy is a rare orphan disease that causes progressive muscle weakness. It starts from the lower legs and spreads up to the heart and lungs. Duchenne patients usually start to use wheelchairs at the age of 12. To stop the progression of the disease they need constant access to the new drugs, physiotherapy, hydrotherapy, healthy nutrition, assistive technologies and inclusive education. Even a walk in the fresh air requires a lot of parents’ effort and time. They have to plan everything in advance and take care of many small details, because even one wrong step can lead to the child's fatigue and worsen his condition.
The Yashchenko family has been fighting for the life of their child for 9 years. Daniil was diagnosed with Duchenne when he was a first-grader. Now Daniil is 15 years old, he has finished the 9th grade and has been using a wheelchair for 2 years. Despite the lack of complex support for patients in Ukraine, this family managed to organize a systematic approach to treatment and inclusive education in cooperation with a local hospital and school. Daniil's mother Marharyta Yashchenko wrote an article called "It seemed impossible, but turned out to be possible in Ukraine" about the inclusive education at the "Viktoria-P" school. All the necessary arrangements at school were put in place with the help of a famous Ukrainian neurologist Yuriy Martyniuk. The article was published in the medical journal "Social Pediatrics and Rehabilitation" and on the website of the NGO "Duchenne Ukraine": http://dmd.org.ua/category/istoriyi/page/2/. In June 2019 Daniil’s eldest sister Alina Yashchenko together with Yulia Moskalenko and Anthony Mclennan, citizen of Great Britain, created a non-governmental organization “Duchenne Ukraine”. It continues to actively work in order to help Duchenne patients in Ukraine.
During the first three weeks of the war, Daniil’s parents tried to work, take care of their son and organize humanitarian aid over the sounds of the air raid sirens. The city of Kropyvnytskyi, where the family lives, is located in the center of Ukraine. As there are no hostilities taking place there, it remains one of the safest places in Ukraine, but the risk of the Russian missile strikes is still present anywhere in the country. Besides, empty shelves in the supermarkets, long queues in pharmacies, and overcrowded hospitals made everyone feel anxious and nervous. In addition, Daniil was unable to go to the shelter, which put the whole family in danger. That’s why Marharyta and her son decided to leave Ukraine for Great Britain under a sponsorship program. They took only few personal possessions, medications, orthoses, mechanical ventilator and a broken wheelchair. On the 29th of April Marharyta and Daniil arrived to their host family that also has a child with Duchenne. They started to adapt to their new life in the house located near the town of Cobham.
Their sponsors helped them to prepare and fill out all the documents, provided a comfortable stay and introduced Marharyta and her son to the team of volunteers working with Elmbridge CAN to help Ukrainian refugees in Cobham. This community group provides Ukrainian families with almost everything and helps them to integrate into a new country.
Several days per week, the Elmbridge CAN team organises informal meetings of Ukrainian families with play area for the kids. This allows people to communicate in Ukrainian and English over a cup of tea or coffee with sweets. People also can ask for clothes and food. Volunteers help Ukrainians to deal with all their issues.
The Elmbridge CAN team took on all Marharyta’s and Daniil’s problems. They offered them psychological support and took care of their everyday routine. The mobility issues can cause self-isolation, lack of communication, reserved lifestyle, and thus, accelerate the disease's progression. To avoid this the Elmbridge CAN team, in cooperation with the sponsor family, developed an action plan for the complex support of Marharyta and Daniil. This plan provides step-by-step solutions for all their problems, including inclusive school enrolment in Cobham, Saturday classes in the American school, additional individual English classes at home, and financial support for transport. The plan will help to ensure Daniil’s full life support and his social integration. Also a Ukrainian-speaking volunteer helps the family to get State assistance.
The action plan is gradually being implemented. Now Daniil has a place in the school and he has already met with the school administration and his English and Ukrainian peers. He has also had his first workout in the pool and met his new physical therapist. This specialist is going to work with Daniil at school and help provide him with such assistive equipment as a verticaliser and night orthoses. Besides, all medicines were received by the family free of charge. Daniil has already had the opportunity to communicate in English with teachers and volunteers of the Elmbridge CAN team. The young man loves LEGO and he has been presented with some wonderful sets by the sponsor family and volunteers.
The local authorities do their best to ensure that Marharyta and her son have everything they need in their new environment. Daniil already has a new electric adjustable bed and all the necessary medicines. He is also going to have a new electric wheelchair and a special chair for working on a computer.
The Elmbridge CAN team and sponsors make real difference due to their overall support and complex help for Duchenne patients. Someone may say they spend too much time and put too many efforts into helping just one family. However by helping one family they start to create a community full of benevolence and confidence in a happy future for the children.
As the war is still going on and many children with Duchenne are staying in Ukraine and waiting for help, the non-governmental organisation “Duchenne Ukraine” protects their rights, works with their families, doctors and representatives of state and local authorities.
A request for help can be made on the organisation's website http://dmd.org.ua/novini/we-ask-help/
HOW YOU CAN HELP
If you want to help more people like Marharyta, please donate to our Refugee Support Fund and share this story with your friends.
If you want to donate any money to help families who have children with Duchenne in Ukraine, you can send it to the non-governmental organisation “Duchenne Ukraine” via this account:
Account: UA753052990000026007045105847
JSC CB “PRIVATBANK”
During the first three weeks of the war, Daniil’s parents tried to work, take care of their son and organize humanitarian aid over the sounds of the air raid sirens. The city of Kropyvnytskyi, where the family lives, is located in the center of Ukraine. As there are no hostilities taking place there, it remains one of the safest places in Ukraine, but the risk of the Russian missile strikes is still present anywhere in the country. Besides, empty shelves in the supermarkets, long queues in pharmacies, and overcrowded hospitals made everyone feel anxious and nervous. In addition, Daniil was unable to go to the shelter, which put the whole family in danger. That’s why Marharyta and her son decided to leave Ukraine for Great Britain under a sponsorship program. They took only few personal possessions, medications, orthoses, mechanical ventilator and a broken wheelchair. On the 29th of April Marharyta and Daniil arrived to their host family that also has a child with Duchenne. They started to adapt to their new life in the house located near the town of Cobham.
Their sponsors helped them to prepare and fill out all the documents, provided a comfortable stay and introduced Marharyta and her son to the team of volunteers working with Elmbridge CAN to help Ukrainian refugees in Cobham. This community group provides Ukrainian families with almost everything and helps them to integrate into a new country.
Several days per week, the Elmbridge CAN team organises informal meetings of Ukrainian families with play area for the kids. This allows people to communicate in Ukrainian and English over a cup of tea or coffee with sweets. People also can ask for clothes and food. Volunteers help Ukrainians to deal with all their issues.
The Elmbridge CAN team took on all Marharyta’s and Daniil’s problems. They offered them psychological support and took care of their everyday routine. The mobility issues can cause self-isolation, lack of communication, reserved lifestyle, and thus, accelerate the disease's progression. To avoid this the Elmbridge CAN team, in cooperation with the sponsor family, developed an action plan for the complex support of Marharyta and Daniil. This plan provides step-by-step solutions for all their problems, including inclusive school enrolment in Cobham, Saturday classes in the American school, additional individual English classes at home, and financial support for transport. The plan will help to ensure Daniil’s full life support and his social integration. Also a Ukrainian-speaking volunteer helps the family to get State assistance.
The action plan is gradually being implemented. Now Daniil has a place in the school and he has already met with the school administration and his English and Ukrainian peers. He has also had his first workout in the pool and met his new physical therapist. This specialist is going to work with Daniil at school and help provide him with such assistive equipment as a verticaliser and night orthoses. Besides, all medicines were received by the family free of charge. Daniil has already had the opportunity to communicate in English with teachers and volunteers of the Elmbridge CAN team. The young man loves LEGO and he has been presented with some wonderful sets by the sponsor family and volunteers.
The local authorities do their best to ensure that Marharyta and her son have everything they need in their new environment. Daniil already has a new electric adjustable bed and all the necessary medicines. He is also going to have a new electric wheelchair and a special chair for working on a computer.
The Elmbridge CAN team and sponsors make real difference due to their overall support and complex help for Duchenne patients. Someone may say they spend too much time and put too many efforts into helping just one family. However by helping one family they start to create a community full of benevolence and confidence in a happy future for the children.
As the war is still going on and many children with Duchenne are staying in Ukraine and waiting for help, the non-governmental organisation “Duchenne Ukraine” protects their rights, works with their families, doctors and representatives of state and local authorities.
A request for help can be made on the organisation's website http://dmd.org.ua/novini/we-ask-help/
HOW YOU CAN HELP
If you want to help more people like Marharyta, please donate to our Refugee Support Fund and share this story with your friends.
If you want to donate any money to help families who have children with Duchenne in Ukraine, you can send it to the non-governmental organisation “Duchenne Ukraine” via this account:
Account: UA753052990000026007045105847
JSC CB “PRIVATBANK”