Former hockey player Joachim Matson talks about support after his son’s illness
The newborn son of Joachim Matson, Leo, suffers from a terminal illness.
The former ice hockey player does not know how long he left his son to live.
A group from the 32-year-old former club Sundsvall has brought the entire Swedish hockey team to a standstill and support the family during this difficult time.
– I never imagined that so many people would be interested in us, says Joachim Matson.
When Leo was born in June of this year, Joachim Matson and his partner Elena Larsson discovered small wounds in their son. The sores developed into blisters and became more and more common.
Later it turned out that the lion suffers from the most dangerous and rare form of the skin disease epidermolysis bullosa – Herlitz junctional epidermolysis bullosa. This means that the skin lacks the protein that holds the layers of the skin together. At the slightest touch, he can suffer from blisters.
– Joachim told Aftonbladet in an interview earlier this summer that he should dress inside so he doesn’t have seams on his body.
I don’t know how long he left the son to live
The disease is fatal and there is no cure for it. Joachim and Elena do not know how long Leo is alive. The average life expectancy of children with this disease is between seven months and one year.
– We just try to take it day in and day out and try to make the most of the time we spend with him. Joachim Matson says: We do our best to create as positive memories as possible.
Joachim is a former elite hockey player who grew up in Modo Hockey, and spent most of his career at Sundsvall Hockey. Among other things, he was involved in taking the club to allsvenskan hockey in 2015. The following season, he chose to put his skates on the shelf.
Hockey Sweden supports the family
When Sundsvall learned of the illness suffered by the son of Joachim, they decided to start a fundraising campaign for the benefit of the family, who were forced to take sick leave during difficult times.
Daniel Koskinen, Director of Marketing at Sundsvall Hockey, said helping them financially in this very difficult situation was a huge confidence boost.
Within a few hours, the group smashed the target of 100,000 kroner.
– We started on the toes with the goal, so there will be something to move on, but we had to review that quickly, says Koskinen.
Currently, the group size is just over 270,000 SEK, and new contributions are available all the time. The collection has been widely disseminated among individuals and associations across the country.
“Not worrying makes a big difference”
We are so grateful to the club but also to all the nice people out there who support us. All the support we receive now means a lot. I would never have imagined and believe that there are so many people who would care about us and that means so much, says Joachim Matson and continues:
– It’s been a long time since I’ve played there, but the fact that they’re doing something like that for an old player is pretty cool.
The contributions will help the family while they are on sick leave.
We don’t know how long we’ll be in the situation we’re in now and then being able to avoid worrying about the economy and being able to use the money for a nice funeral, of course, makes a big difference, says Joachim Matson.
Facts: Bullos Herlitz . epidermolysis
- Epidermolysis bullosa (EB) includes about 30 different diseases characterized by a genetic tendency to develop blisters on the skin.
- Epidermolysis means shedding of the epidermis and blistering means blistering.
- Epidermolysis bullosa can be divided into four different groups, depending on the layer of skin in which the blisters are located, the degree of their severity, and whether there is a tendency for scarring.
- The most unusual and worst type is Bullos Herlitz hereditary epidermal necrolysis with an average lifespan of 7 months to 1 year.
- In junctional epidermolysis bullosa, blisters appear at the transition between the epidermis and dermis.
- In severe Herlits type, the child is often born with blisters and sores on the fingertips as well as more or less shedding of the skin which gradually spreads to the mucous membranes of the mouth and gastrointestinal tract. Because of fluid loss, infections, and poor absorption of nutrients, there is a high risk that babies will die within the first year of life.
- According to an American estimate, epidermolysis bullosa occurs in about 5 people per 100,000 population. The number of people born with type Herlitz is much smaller.
source: National Council for Health and Welfare