Life with HAE through a mother's eyes

10. 1. 2021

Supporting the development of my children's talents has returned the joy of life to our whole family - in spite of HAE diagnosis and other obstacles in life.

As you know, hereditary angioedema (HAE) is a rare lifelong disease. The moment when my first son Leošek was born in 2008, I first learned about this rare diagnosis. My life turned upside down. I was very worried about how best to look after of my son with care and love, how to learn to live with this disease.

After three years, my second son Dominik was born. My happiness was enormous, but at the same time I felt a constant fear for both sons due to their HAE. The struggle to offer them a "normal life" was exhausting from the beginning and it required constant explanations about the disease not only to doctors, but also to people we interacted with. The fact that very few people know this disease is a very big problem, as it was always difficult to find support and help when we needed it. In addition, we had to deal with a very complicated family situation, which led to a great psychological burden on our sons and a complicated economic situation for all of us. Fortunately, based on the court decision, these difficult family issues are already behind us and the boys are now gradually gaining their peace of mind and confidence.

As a mother, I really want to support and motivate them to discover and follow their talents, so that they enjoy life as much as possible. That's why I was very happy when both sons got a chance to take part in the movie The Painted Bird. This film shooting was an interesting experience for both boys and they really liked it. Later, my younger daughter also was able to participate.

The younger son was so impressed by this experience that he wants to continue filming and his dream is to become an actor. He has already been offered a long-term cooperation agreement for photography and commercial shooting. We managed to find suitable sports activities for our sons, even though they have certain limitations due to HAE. After explaining the situation and agreeing with the coaches, the boys can finally play sports. The younger son discovered his passion for baseball. He really enjoys it, the coaches praise him and have big plans with him. The older son found his passion in softball, but he is more interested in everything around computers (such as graphic design), and drawing, in which he is quite good. The youngest daughter, who does not suffer from HAE, enjoys dancing and has a beautiful relationship with her older brothers.

During the corona crisis however, we had to deal with a very difficult situation. I am very grateful to the patient organization HAE Junior for helping us when we needed most. Thanks to the support of HAE Junior, we gained, among other things:

  • useful information in relation to new available therapies for HAE in children
  • course fees for our boys as part of HAE Junior’s project "Inclusive Scholarships", supported by Avast Foundation.
  • referral to a suitable non-profit program offering economic support to families with children negatively impacted by the corona crisis.
  • referral into the non-profit program “Computers for children”  offering free computers for online schooling to disadvantaged families with more children.

I am very grateful for the support HAE Junior patient organization. At the same time, my husband and I are happy that the children found their passion in the new hobbies and that they finally regained their lost self-confidence and joy, in spite of the burdensome HAE disease.

Michaela, mother of two children with HAE

Contact:

HAE Junior non-profit organisation
Wichterlova 2372/8, 
Prague 8, 182 00
Organisation ID 08749787

info@haejunior.cz
704 007 717

Contact for journalists:
media@haejunior.cz

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