Diagnosis of the child
brittle bone disease (osteogenesis imperfecta)
Brittle bone disease is a genetic bone disorder characterized by fragile bones that break easily. It is caused by a faulty gene that reduces either the amount or the quality of collagen – a protein in a body that forms and strengthens bones.
The purpose of the collection
surgical correction of the thighbone and shinbone at St. Catherine Hospital in Croatia
History of the child
It’s a story about a little fragile princess who was born with brittle bone disease. It took her parents a lot of time to learn how to swaddle, hold in arms and bathe Kira.
“It was such a great luck to meet the professor that explained how we could help our daughter. On a small piece of paper he wrote the names of drugs, and it was the moment when the struggle for Kira’s life began. Our three-week-old daughter was given the first course of bisphosphonates. And we are really grateful to the Center “Mother and Child” for taking on this responsibility”.
Only a couple of days later the girl has broken the arm, in a week – the second one. It was unexpected: Kira’s mother just noticed that the baby couldn’t move her arm… In a month and a half they were discharged from the hospital and the parents of the child began to learn how to take care of their girl all over again.
“We were afraid of hurting our daughter, but in a short time we have learnt to kiss and hold her in arms with care. Every three months Kira was given an IV, and the results were wonderful: our baby has begun to move her hands and hold her head”.
During these three years Kira’s parents have done a lot not only for their daughter. Thanks to them children with brittle bone disease have a possibility to get free medical treatment in Belarus.
“My husband and I have been always proud of our daughter. She is the biggest pleasure and happiness of our lives. Kira is very outgoing, and everyone likes her for this feature”.
When Kira was 3 years old, she could only crawl. And most of all in the world her parents dreamt to see her first steps. When they got information about a clinic in Moscow, that deals with the children with brittle bone disease for more than twenty years, Kira’s parents did their best to obtain treatment there. With the help of Rusfond (a charitable organization in Russia), the amount of money, needed for medical treatment, was collected. And from that moment everything has changed radically.
“We got a set of exercises, that we had to do every day. Of course at first it was difficult: at the age of three Kira did not understand how important these exercises were. But after six months our girl started to stand, and even walk. We were over the moon!”
Now Kira is 6 years old, and she has already many friends who help to make her dreams come true. Kira took part in the fashion show. It was unforgettable, because the fulfillment of this dream took her a lot of effort. Just a month before the show, the girl broke her shinbone. But she coped with it and was able to make a couple of steps on the stage.
“Also we were lucky to get acquainted with the gymnast Alexandra Narkevich, who dedicated the opening of her school to Kira. Thanks to her and many other people, we bought special medical walkers. With the help of them the girl was able to play football and run a little bit”.
One more dream came true, that the girl could not even think about. Because of the decease, it is difficult (and even dangerous) for the child to dance, but it hasn’t stopped her from participating in the Indian holiday in Minsk. Now Kira says that most of all in the world she likes dancing.
The girl with a fragile body, but a strong soul has already 24 fractures. Kira understands that she needs a surgery and helps her parents. The teacher of the art studio, where Kira studies, has helped to organize the exhibition “The Way to the Dream”. The operation is partly financed by the proceeds of this exhibition. Unfortunately, the collection of money goes on very slowly, but the surgery is required as soon as possible. Because of deformation and curvature of the legs, each step takes a lot of effort. Telescopic nails can improve the situation and make the legs of Kira stronger.
“Everything we have now is only hope. We, the parents of this little angel, appeal to you. Please help us. You are our last chance to put our girl on her legs and fulfill her dream to go to school on foot”.