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He has suffered from Duchenne muscular dystrophy.
From: Malin Wigen
Published:
Photo: Private
Valter is seriously ill with a muscle disease.
Within a few weeks, parents Emilia and Micke were informed that their son had suffered from two rare diseases, one of which was incurable.
– Seeing your son disappear is horrible.
It was all discovered last fall when Emilia and Micke Söderblom from Uppsala found a blow to the head of Valter, who is now four years old.
– It had fallen off two weeks earlier and had been hit hard on a glass table, so we first thought the lump had come from that, but then we felt the lump was soft and we thought it was strange.
They went to the emergency room and Valter had to have a skull x-ray. It turned out that a penny-sized piece of the skull was missing. After several tests, he was diagnosed with Langerhan cell histiocytosis, a rare disease that affects between 5 and 10 children in Sweden each year. The disease means that a type of cell is formed that can cause damage and symptoms in various organs, including the liver.
– The disease is treated as cancer. It can be cured with cytotoxic drugs, cortisone, and radiation. The disease can also disappear spontaneously.
Photo: Private
It was all discovered after Valter was diagnosed with Langerhan cell histiocytosis.
Valter, however, did not have to be treated when they managed to operate on the tuber and since it did not spread anywhere else on the body. But parents would soon get a worse message. In connection with a blood test, the doctors saw that it appeared that Valter also had a muscle disease.
– But then they didn’t know which one. It could be anything from not being able to play soccer to the worst.
Twelve days before Christmas, they were diagnosed. Those who had read his diary had their fears confirmed.
– It was completely dark. We hoped she didn’t have the disease we feared, but we broke down when the news came.
Valter had suffered from a muscle disease, Duchenne muscular dystrophy, a disease that causes muscles to shrivel up and turn to fat. It affects about ten children a year. The disease is progressive, at the age of twelve he is usually in a wheelchair and there is still no cure.
– The life expectancy of those affected is currently 25 to 30 years. It’s a shame that nothing can be done. We will see our child get worse and worse as other healthy peers become more independent, parents say.
Photo: Private
Emilia and Valter.
Emilia and Mikael had a hard time getting their children to receive two unusual diagnoses in a few weeks.
– We were very shocked and very sad, then we also got angry: Why him? An innocent child. That he is sick.
Right now, Valter is receiving cortisone to slow down the disease. They also receive help from the habilitation in Uppsala. Now it is important that you do not work too hard. Among other things, they have introduced a wheelchair, which will help you save energy when you go to a playground so that you still have energy to have fun.
– We have to help him more than we have had to help his sister, like dressing him and helping him up the stairs. He cannot jump on a trampoline but we have to jump with him in our arms so that he has the feeling of doing it. He can’t run either. He has asked if he will ever be able to jump and run like his sister, which he will not. It’s going to get worse, which you don’t know yet. We try to answer your questions so that you understand.
Photo: Private
They have to hold him in their arms when he has to jump the trampoline, as he cannot jump by himself.
Could you see signs of the disease when you were younger?
– In hindsight, maybe. It was quite a while before they dared to leave him sitting on the ground. As it was, it fell down. However, he arrived early with the speech. So when we mentioned that he couldn’t jump on his three-year paycheck, they said there was nothing serious when he could talk.
The situation right now feels heavy.
– We try to be strong in front of children but when they sleep we collapse. Watching your son disappear is horrible. The disease is one hundred percent fatal, but we don’t yet know how long it will take.
Photo: Private
Valter and Micke in play therapy.
His hope lies in the investigation. That is why they also talk about their condition, in the hope that more people will contribute money for a cure to develop.
– You feel like you are the first generation that may have a chance to heal, or you belong to the last generation that does not.
Right now they are taking one day at a time, and they still have hope.
– A lot has happened in recent years with the investigation. Even if we know what the situation is right now, we must be hopeful. However, it doesn’t take many years until it gets worse and worse, so something must happen now in the next few years.
FACTS: SO you can contribute money to research
Right now, former athlete Stefan Holm is raising money together with the Muscular Dystrophy Research Fundraising Foundation, SMDF, by building a Lego boat. For every one hundred crowns donated, you get a new Lego piece to build. The pot should consist of 13,000 pieces and is a symbol of the dystrophin gene. Here you can read more about how you can contribute to building and fundraising and here you can read about the foundation and how you can donate money for research.
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