English

Ola is 12 years old. Since she was born she has reduced tension muscle, impaired sensation in her hands and feet, contractures in the joints of the hip, knee and elbow, and she has laxity in the pastern and ankle joints.

Ola moves around by a wheelchair, she is unable to walk herself. She needs help with basic life activities. This year had a genetic study made, which confirmed the earlier diagnosis established by a doctor. Ola's disease is Ullrich Muscular Dystrophy.

Today, the greatest problem is the progressive curvature of the spine, which disrupts the heart and lung functions. Ola has poor respiratory function and the latest studies have shown high hypoxia. For this reason, from 2015 Ola has been using a BIPAP respirator during the night.

Ola's health condition is getting worse. This process can be slowed down only by everyday expensive rehabilitation.

Ola has to use an electric wheelchair and spine corset. Because Ola continues to grow, her rehabilitation equipment requires replacement or adjustment at least once a year. Due to respiratory failure and scoliosis of the spine surgery is seriously considered this year.

In spite of all these difficulties Ola is cheerful and has a great sense of humor. She learns very well in the fifth class of the primary school in Bibice, she reads a lot of books, is eager to paint and play chess. Ola plays a keyboard, she is interested in geography, has plenty of plans and dreams.

Her experiences are strongly reflected in the various art works and short texts she creates. Ola has an inner strength that helps her struggle bravely with the disease. She not only loses no hope but also makes a great effort to support other people.

If you would like to help Ola, go here