Linduška - As of 31.1.2025, CZK 25,000 had been raised to help Linduška

Dear donors,

allow us to introduce our little daughter Linduška, who has been genetically diagnosed with the rare condition achondroplasia (a bone growth disorder in which cartilage does not turn into bone), which means she cannot grow like her healthy peers. In Slovakia, people with this condition are called “Thumbkins.” In adulthood, without medication, she would only grow to a maximum of 120–130 cm and could have many associated health complications.

There is an innovative medicine for this condition, which, unfortunately, health insurance companies in Slovakia do not want to reimburse because it is not categorized. This medicine can be administered to children from the age of 2 years. Recently our Linda celebrated her first year, and since we do not know how the situation with the availability of the medicine in Slovakia will develop, we decided not to wait and try to raise money for this medicine for her (EUR 160,000 for one year of treatment), which we would like to secure as self-payers in the Czech Republic from August this year.
 

Even prenatally, on the morphological ultrasound at 31 weeks, Linduška was found to have a probability of rhizomelic skeletal dysplasia. The most common form is achondroplasia, which was also genetically confirmed in her case. In our case, it was caused by a random gene mutation and results in body disproportion - significantly shorter stature, short limbs, a larger head, a prominent forehead, a shortened bridge of the nose, and more. According to preliminary measurements, Linduška will be about 120–125 centimeters tall in adulthood, and therefore will need help from those around her in ordinary life situations.
 

If, however, she had the opportunity to receive the innovative medicine Voxzogo, which is administered by injection every single day until puberty (closure of the patient’s growth plates), she could reach the height of her peers. The problem, however, is its price, which comes to approximately EUR 160,000 per year. Health insurance companies in Slovakia refuse to cover the treatment for children, while in some countries in Europe (the Czech Republic, Austria, Germany, France, …) it is fully reimbursed. 

Voxzogo would help Linduška not only grow, but also prevent many possible associated health complications such as cardiovascular problems, spinal curvature, bow legs, hunchback, impaired breathing, sleep apnea, spinal stenosis, orthopedic problems, ENT difficulties. It would help minimize or completely eliminate the characteristic facial features of achondroplasia such as a prominent forehead, midface hypoplasia, orthodontic problems, her nasal bridge would grow, headaches, neck pain, knee pain, and much more would be eliminated.

Dear donors, if you can help in any way, whether by contributing or sharing this request, we will be very grateful to you and you will help Linduška make her life better quality.

With heartfelt thanks!