Our Veronika has not had it easy since she was born.
Soon after her birth, she was transferred to Motol Hospital, where they discovered that the nervous system in her intestines had not developed. As a result, the dead bowel had to be removed, leaving her with only about 40cm of small intestine. Because her intestine is so short, she is fully nourished by artificial parenteral nutrition and has a stoma on her abdominal wall.
She therefore needs regular care, which consumes a large amount of medical supplies, including ostomy bags. Unfortunately, insurance companies only cover these to a limited extent, and Veronika uses at least eight of them a day.
That's why a yearly stay by the sea in saltwater helps her so much, as it heals the irritated, and at times broken, skin around the stoma. This stay helps heal the area around the stoma, and the skin remains calm for several months.
We would like to take this opportunity to thank all the donors who are helping Veronika in this difficult situation. Thanks to your contributions, we have been able to buy a year's worth of medical supplies and pay for a recuperative stay by the sea.
Of course, Veronika's condition will not improve; she is dependent on the stoma for life and must constantly care for her heavily stressed skin, which is severely damaged by the daily application of ostomy bags. But Veronika is very brave and tries to live a completely normal life. She is clever, does well in school, loves to paint, and adores animals. Just a normal (albeit seriously ill) girl. And that is also thanks to all the kind donors and the Constellation of Help project. Thank you so much.
Veronika with Short Bowel Syndrome
Veronika with Short Bowel Syndrome
Thank you so much.
Living with a serious illness
Eleven-year-old Veronika suffers from a rare disease. She was born almost without an intestine and has had to have a stoma since she was a baby. She has to apply an ostomy bag to her body several times a day, which severely damages her skin. That's why she urgently needs at least one recuperative stay by the sea each year, which incredibly helps her skin to heal.
What does Veronika suffer from?
It is a condition diagnosed as Hirschsprung's disease with total intestinal aganglionosis, which was treated by resection of part of the jejunum, ileum, and the entire large intestine. Thanks to an intestinal lengthening surgery, she currently has about 80cm of small intestine (up from 50cm) with an ileostomy. Her small intestine opens out onto the abdominal wall. Therefore, Veronika receives most of her nutrients through an infusion, so-called parenteral nutrition, via a central venous catheter that is inserted through a subcutaneous tunnel into the subclavian vein. Veronika's illness is rare, and both her parents and doctors are still learning.
About the foundation
For almost twenty years, the public benefit corporation Život dětem o. p. s. has been helping families with seriously ill children. The organisation is known to the public through its fundraising campaigns, Srdíčkové dny (Little Heart Days) and Sbírka Srdce dětem (Hearts for Children Collection).
Project sponsor
The sponsor is the founder and director of the Život dětem organisation, MgA. Maria Křepelková.
Specifications
Project goal
Location of assistance
Charity
Field of assistance
Basic
| Code: | NEZ00005 |