“Those of us who have never experienced a world where nothing measures up can’t imagine the challenges it brings on a daily basis,” writes the mother of 6-year-old Tessa. Tessa and four other children supported by the Children’s Foundation suffer from a rare, growth-stunting condition called achondroplasia. If left untreated, it causes severe pain and serious health problems. A drug that adds centimeters and keeps away the pain exists and works wonderfully: Lithuania has just decided to include it on the list of publicly funded medicines. When will Estonia do the same?

So far, the growth of these five children is relying on donors, already for more than two years, and we are once again asking for help to buy the expensive drug Voxzogo, which costs almost €200,000 per child per year.

We recently asked the families how they are doing, and their answers were very similar: the children are doing better, their proportions and balance have improved dramatically, and they need less and less help with their daily activities. For example, 3-year-old Loviise can now wash her face and hands with the help of a step stool, and she is also washing her toys several times a day! 🙂 She still needs help to turn the light on, but she can now turn it off by herself.

The mother of 7-year-old Sander-Lucas says with a smile that the family is visiting the clothing shop more and more: the boy is growing, and their joy is boundless! Sander-Lucas is active and curious, and the confidence and strength he has gained from his treatment allow him to explore the world like other boys his age – on the run.

Lara’s mother is delighted to see that her daugther falls much less than before: it’s a great relief. Her growth centimeters are on the increase, so the next doctor’s appointment and official results are eagerly awaited in mid-October. The news from 7-year-old Kateryna’s family is mind-blowing: this summer, she learned to ride a bike and play the ukulele – both of which would have been impossible without the medicine that has significantly increased the growth and strength of her arms and legs.

So that the families can continue to share news of new achievements – small but hugely important – we are asking for your help, dear donors. The growth journey of Tessa, Loviise, Sander-Lucas, Lara, and Kateryna can be supported in several ways:

  • By selecting “Akondroplaasia ravi” from the donation form on our website.
  • By making a transfer to the donation account of Tartu University Hospital Children’s Foundation, indicating “akondroplaasia” or the name of the child in the explanation:

SA Tartu Ülikooli Kliinikumi Lastefond
Swedbank IBAN: EE682200221015828742
SEB IBAN: EE261010220014910011
Luminor IBAN: EE791700017000285384
LHV IBAN: EE527700771000610813
Coop IBAN: EE824204278603586607