Help for Ula!

Ursula's disease surprised us. We are faced with a very difficult challenge - we have to collect a huge amount of money to pay for the operations of our beloved daughter. If we fail, her future will be full ofdifficulties in functioning ... A terrible disease has made Ula's hands deformed and grabbing anything is a challenge. We love her the most in the world and we will do everything to ensure that her development and further life are not associated with a disability.

Everything was ready for her birth. We were excited;everyone was counting down the days to delivery. There was a smell of baking gingerbread in the air. Ula is our pre-Christmas gift. First we saw her beautiful smile, then her deformed hands.

Genetic defects - this is what we feared the most. This is not how we imagined our daughter's future. Today we know that we will fight for her with all our strength, but to make this fight successful, we will need your help...

Ula was born without some fingers. Some of the bones are fused, some aren't growing as they should. She is less than a year old, and already has to struggle with such adversities. What will be next? How will she deal with kindergarten? What will she tell herfriends when she can't grasp a toy in her little fingers?

We visited several doctors, but none of them was able to help us. The surgery carried out by Dr. Paley gives our daughter the best chance for manual dexterity. We already know that Ula will need several surgeries, and the cost of each is terrifying. The operations are not reimbursed by the National Health Fund. The first one will take place between 18 and 24 months of age.With such huge amounts of money to acquire, we have very little time.

We would like to give her the world. Watch her smile as often as possible. To know that she is in no danger, and that her development is almost book-like. We have to raise the money as soon as possible. Ula is growing and we are running out of time. We are not able to collect such huge amounts alone. That is why we are asking for help now, to be able to fight our daughter's disability!

Parents.

Update as of 31.01.2022

We got the results of part of the genetic tests that sent a shiver down our spine and brought anxiety into our daily routine.

Ula has the Cenani-Lenz syndrome. It is a group of malformations that result in deformations in the hands, feet and spine, as well as in the bones of the forearm and lower leg. Terrifying, yet such needed information about our daughter...

At this point, we know that Ula’s changes happen to beonly in her hands. On the one hand, we are happy that the disease did not attack her entire body; on the other hand, we know that we have to fight to stop its effects...

There are fewer than 30 cases of Cenani-Lenz syndrome reported worldwide, which is 1 in approximately 300 million people... Why did it happen to her?

Parents.