The story of Jerguš
We found out during pregnancy. Jergus dad had a classmate with this diagnosis so he knew it and was not a big tragedy. But parents’ natural desire is to raise healthy children, so you can imagine the fears and distresses of parents who don’t know what to expect.
Jerguš was born in the Czech Republic. We were lucky to have great doctors and physiotherapists, so we knew that with children with this diagnosis we had to pay attention to the healthy development of motor skills, which also condition mental development. That’s why for the first two years of his life we practiced the Vojta method 4 times a day with Jergush. Children with large heads and short limbs have to put much more effort into reaching developmental milestones, because it is more difficult for them due to their shifted center of gravity and limited movement possibilities. So, whether the Vojt method or other exercises, it is very useful for children with achondroplasia.
We didn’t do a lot of adjustments at home. We dealt with whether to have everything adjusted and facilitated, or whether to be more resistant and “trained” to the adversity of the common environment, which is not adapted for people of short stature. Jergus has a stool by the sink in the bathroom and on the toilet and a modified dining chair. We tied strings to the handles, which Jergush could pull to open the door. Now he can jump out and the laces are no longer necessary.
Most often we deal with upper respiratory tract infections and associated ear infections, as the eustachian tube is narrowed. The secretion that remains in the ear causes Jergushka’s hearing loss. In this case, the Thumbs have to undergo surgery under anaesthesia to insert stipulas (ventilation tubes). Often times repeatedly. We have two fantastic doctors who take care of Jergušek, MUDr. Richard Kulich in Ružinov and MUDr. Iveta Králinská in Zvolen.
The whole family agrees that if we want to avoid obesity, we have to be careful with our intake of sweets, because Jerguš really likes them. Movement and regular exercise helps all the Thumbs a lot in the coordination of the whole musculoskeletal system. We are very lucky to have met Dasa Petkova, PhDr. from REOcenter, who helps us to keep Jergus in shape.
Of course, like any parent, we first of all studied everything we could about this “disease” and the possible procedures to “cure” it. The quotation marks by the words “disease” and “cure” are on purpose because, when you listen to the wide spectrum of opinion of Mittens themselves around the world, you will find that not everyone is willing to classify their condition as a disease. We are very prone to lean towards that view. It’s all about setting perceptions and social tolerance.
On the other hand, however, a person with short stature does face serious obstacles. From simple things like the counter at the post office at a height that is very uncomfortable (sometimes even impossible) for a dwarf, to (for a dwarf or a little girl) almost climbing steep stairs to get on a bus or train, to those almost unheard of and ignored matters like social attitudes (from patting on the head, to teasing, to humiliation, to bullying, to other ills that I’d rather not even mention here).
He already knows that he is not growing as fast as other children. His 4-year-old cousin is already taller than him. But we don’t think he realizes the full extent of this yet. Fortunately, he is popular with his classmates at school and so far we haven’t noticed any of the negative phenomena we mentioned above. Jerguš is very fond of drawing, composing different things out of paper (airplanes, diamonds…) He has a great desire to “master”. He plays the piano, the dulcimer, the drums, sometimes he plays the ukulele, sings loudly from the heart. She has a huge imagination for dance creations. He also seems to have a passion for skiing and, like every boy, he loves to wrestle and fight. He is fascinated by cooking and baking, and is his mother’s right hand man in the kitchen.
We are aware that if we could help Jerguš (for example with new treatment, if he ever gets to Slovakia) to grow a few centimetres, he could have a more comfortable life, because he would be able to reach some things better. We make sure that he has an overview of everything he could do, regardless of his condition, and that he is confident, resilient and persistent enough to be able to make his ideas come true.
Having a special child is always more economically challenging. So any (financial) support would come in handy. It would be absolutely best if one does not feel like a crook at the Social Welfare and Family Welfare office, who wants to rob the state of some benefits. We know of stories where families have either been refused or even withdrawn benefits and have had to appeal and produce new documents in order to get the allowance or benefit to which they are entitled under the current rules. Why do officials do this? To save the state money? About 50 000 children are born in Slovakia every year. Of these, there may be two, perhaps three, little ones. Thus, in the last ten years, a maximum of 50 have been born. If everyone received €500 a month, it would cost the state €6,000 a year. A state that is expected to have a revenue of 44 billion Euros in 2022.
If families knew that the state would help them raise a special child in this way, they would be happier. The children would grow up with a greater sense of security and ultimately be able to create value for society. However, if they grow up feeling distressed and uncomfortable, it is quite possible that their world of values will be put together in a different way.
Society should be more open and, to use the modern word, more inclusive towards people with disabilities. However, it needs to be prepared, educated and encouraged or motivated to do so. That can be changed, but it is difficult to commit to something like that when you have to look first and foremost at whether you have enough for ordinary life. The health service has huge systemic problems, so to expect it to suddenly start to understand the needs of babies who are born once every 25,000 births is probably naive. Some doctors make up for this with their commitment, humanity and willingness. We are very grateful to them.
Message for families who have just found out that their child has or will have achondroplasia
– Your child is a tremendous gift. Even with his slow growth, he can always make you happy, make you laugh, surprise you. All children get sick or injured from time to time. With all children, there are “a few” things to watch out for. With thumbs, it’s just a little different (and a little more challenging), but basically the same.
Focus on the good stuff. The Indians say there are two wolves living inside every man. A good one and a bad one. The one that gets more food (attention) wins.