Hania, 9 months old, was born with Crouzon / Pfeiffer syndrome. Costly operations are required to correct the bones of the skull. Surgery at a clinic in Dallas may be a rescue for Hania. Parents are asking for help in collecting the sum needed for treatment.
- Hania was born with Crouzon / Pfeiffer syndrome, a very rare genetic disorder that causes the bones of the skull to grow abnormally
- One in a million lives with such a disease, say Hania’s parents
- The treatment is to be provided by a specialist clinic in Dallas. The costs of tests and treatments are huge, so the family asks for help in collecting the appropriate amount
- You can find more such stories on the TvoiLokony home page
Hania has Crouzon / Pfeiffer syndrome
Hania is 9 months old. She was born with Crouzon / Pfeiffer syndrome, a very rare condition. Crouzon / Pfeiffer syndrome causes premature ossification of skull elements (while still in the mother’s womb), so that the baby’s head grows abnormally, resembling a clover leaf. Children with the FGFR2 gene mutation have 20 percent. chances of surviving the first year of life.
- They suffer from a rare genetic disease. Life keeps hurting their feet
Hania is developing properly, she is feeling very well, apart from the aforementioned disease, she is fine. However, surgery is necessary, and in fact several.
Parents found a suitable clinic in Dallas. Local specialists propose innovative methods of correcting skeletal defects. The clinic has extensive experience, has already carried out many similar operations, thanks to which Hania has a chance for a normal life.
Hania’s treatment will be long-term, and several surgeries will be needed. As the head and brain will continue to grow, the treatment will have to be repeated every few years. In total, it will cost several million zlotys.
Operation Hania – help needed
Parents called Association for them. Hanka Krakowska based in Bydgoszcz. Its task is to organize and finance treatment and rehabilitation procedures, purchase medical equipment and provide psychological assistance. These activities are to help Hania become an independent person in the future, enjoying life to the full.
The first visit to Dallas is due this spring. The operation can be performed until the child is 12 months old – the later the better, but if the girl’s health worsens, it will have to be accelerated.
A few days ago, Hania was in Warsaw for a test, which was to check how the brain grows, whether it is not dangerously close to the skull bone and whether there will be dangerous pressure. This study also depends on whether the visit to the USA will not need to be accelerated. The results of the study on Monday were to be sent to Dallas.
The costs related to the visit to the United States will amount to approx. PLN 500 thousand. zlotys. Only after arriving at the site, will Hania be subjected to in-depth diagnostics. Then a decision will be made whether the girl will undergo one or two operations. Perhaps only the back of the head will be operated on to “release” the growing brain, but it may be necessary to have surgery on the front to reduce bulging of the eyes and improve the airway.
You can support Mała Hania by donating funds to the collection as part of the Zrzutka.pl platform. It is available here: https://zrzutka.pl/dlahanki
You can also take part in auctions, the profit of which will also be transferred to Hania’s account: https://www.facebook.com/groups/dlahanki
Hania’s mother is a foster child of an orphanage and has promised herself that she will provide a loving home for her family. Hania’s parents waited a long time – only she was not completely happy.
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- Basics of genetic diseases
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