Hi everybody! I’m Julia!
Julia was born on March 9, 2014. Chubby and alert, she looked us in the eyes with confidence. «Healthy girl» is written in her health care booklet. We firmly believed in that. Even when Julia only learned to walk at the age of 17 months, this didn’t tarnish our confidence – some children just need a little longer. We put the late language acquisition on the ear problems. When these were resolved, Julia learned to express herself very well.
Julia is and always has been very people-loving. A benevolent smile, a child’s hand reaching out to her, and a «play with us» are the most important things to her. Doing something together is always more important to Julia than what.
Until she was around three years old, Julia liked to play with her toys, make coffee for the dolls, paint and do puzzles like a world champion. Little by little she wasn’t interested anymore and we searched desperately for new toys that were interesting for her. But Julia would rather go to the playgrounds and meet other children, would rather go for a walk on the scooter, would rather run around and frolic. At the same time we waited for Julia to reach further development milestones, to finally get rid of diapers, to make progress in her play development and communication.
When this did not happen, we explained this to us and to those around us with the birth of her sister. Nevertheless, question marks remained, fears stirred in us that Julia might have more difficulties than assumed. Clarifications, however, always yielded negative results: ADHD and autism were excluded and finally genetic tests were recommended. What these brought to light exceeded our imagination in the greatest measure. Beyond. We didn’t even know about the existence of such a brutal disease, which is very simply described as «Children’s Alzheimer’s». The symptoms are very similar to children’s dementia.
It was December 5th, 2019.
The blackest and saddest day of our lives.
From then on, a lot has changed in our life. We now knew our enemy and have started to fight against this disease and for Julia. Today Julia only speaks single words, with luck short sentence fragments. We remember the endless torrents of speech of a very communicative child with melancholy.
Her tongue loosens while singing and from children’s songs, which she has been listening to since the first few months of her life and later always enjoyed singing, sometimes come spontaneously from her lips. Above all, she can sing her lullaby «Ninna nanna mamma, tieni mi con te» with almost no mistakes. In other songs, she remembers individual lines or words. From her time in the nursery in Chur, she took many favorite songs with her, which we can sing to her again and again and then look into her shining eyes. We accept every word from Julia so gratefully. We don’t know when she will last say Mama, Papa or Giada. Or will we win? Conquer the disease! We wish it so much.
Julia is a very active girl. She jumps around, hops on her trampoline, likes to run while walking across meadows and fields, loves the boundless expanse, where there are neither cars nor other dangers lurking. She cannot assess these dangers, does not know them, ignores them and makes mom and dad sweat in the process. Julia can be extremely fast. The more you want to hold her, the more she wants to run away from you, feel freedom, determine for herself, following her instinct and her impulses. It is difficult for Julia to control them, they are too strong, the illness has robbed her of the necessary reflection. Julia doesn’t want to offend anyone, she just can’t help it. She just has to do whatever is on her mind. When she sees other people, it is like a reflex, like a magnet, she wants to go to them, she wants to greet them and be noticed by them. Say «Hello» to Julia when you see her, she is very happy about it. Do you also know her parents, shake hands with Julia and look at her, talk to her, she will thank you a thousand times. If you turn away from her, however, she becomes very sad and in her desperation she searches for you with her hands, sometimes powerfully sometimes less.
However, Julia’s movements are becoming more and more awkward. She often trips, has bruises on her shins, and sometimes she loses her almost infinite strength and energy. She recently received orthotics for both feet, which look inward more and more. Julia’s brain commands this and she cannot defend herself against it. Only in water can she move freely without fear of falling or bumping into something. With her wings she prefers to be in the big pool, where there is almost limitless water around her.
Julia loves to eat, preferably in a restaurant or with visitors. At the age of one she already had a preference to eat Costini, with the bone, please, and was able to use the spoon to eat without much mess. Julia eats almost everything, preferably fish and meat and green salad and of course Daddy’s homemade pizza and fries with a lot of mayonnaise. At the age of three, she ate with a fork and knife in a way we had hardly seen any child before. Today she prefers to eat with her hands. The fact that Julia used a fork and knife at the same time has long been a memory and even individually, the meaning of the cutlery is seldom revealed to her. She can still usually eat herself or with our help and also swallow it. However, she chokes more and more frequently, and the coordination of swallowing and breathing is becoming increasingly difficult. How much longer can she eat herself? We hope that the research will be faster and that we will never have to put Julia a feeding tube.
Julia is joy, is sunshine, is a lot of untroubled exuberance. She wants to hug the whole world. She only becomes sad when she is not understood.
But isn’t it the same to all of us?
Imagine how difficult it is to be understood when you are at a loss for words.
We thank everyone of you who tries to empathize with Julia and give her what she needs so endlessly.