Save my legs from amputation!
Operation in The Paley Institute, USA.
Ends at: 31 December 2019
Although it’s hard to believe, we weren’t one of those parents who waited impatiently for their children’s arrival into the world. We didn’t choose names, we didn’t prepare layettes. During the pregnancy, we found ourselves in hell, where taken from us was our peace of mind, and we were forced to drink a cocktail of fear, mixed with uncertainty over our babies’ lives.
We wished for Wiki to stay together with her brother in the womb as long as possible, where she was safest. A terrible diseased touched her, so rare that it doesn’t even have a name in polish. Femoral Facial Syndrome - a disease which caused a number of orthopedic defects. The only way to save our daughter’s legs from amputation is a horridly expensive operation in the USA…
The pregnancy left us elated. Indescribable happiness. We were beyond glad that our firstborn daughter would finally get a sibling. When, however, after a couple of weeks it turned out that not one but two new hearts beat inside me, my happiness outright exploded! Unfortunately, after routine ultrasound scans in the 26th week of pregnancy, the happiness faded… A broken thigh bone - unknown when it arose. Unknown, also, was its cause. Where happiness was before, now appeared infinite fear…
Since that moment, the pregnancy was referred to as high-risk. Every moment came new medical examinations and scans, constant consultations with specialists around Poland. Each examination brought worse and worse news: fractures in other bones, suspected bone fragility. We weren’t sure what to do next - the doctors told us to prepare for the worst. Anything could happen - from broken spine to miscarriage. Our friends asked us about baby names, while we tried hard to hide our suffering and tears.
We had one goal - to maintain the pregnancy as long as possible, so that our babies could develop and get ready for a life outside the womb. Suddenly, however, in the 33rd week of pregnancy, a problem arose in the other twin. Our son - Mateusz. A drop in pressure; no choice but to perform an emergency C-section. It’s May 17th 2017. I don’t even have the time to feel happy about giving birth. After the C-section, Mateusz’s situation is getting worse. Sepsis is attacking, along with respiratory failure. Doctors are fighting for his life, weekly. Countless platelet transfusions, plasma, liters of antibiotics. When he gets close to death, we’re dying with him. Fortunately, the doctors are able to save him.
Wiktoria was stronger, yet still fraught with a number of orthopedic defects. Lack of the 9th and 10th ribs, double bones in her big toe, too short and defected thigh bones, missing pubis bone and kneecap, dislocated hip, as well as a foot in heel position. From the moment of leaving the hospitals, she had casts, straightening of the legs and toilsome, painful rehabilitation, thanks to which her foot was able to return to its normal position. And yet, the burdening question remained: what next with her legs?
Tens of consultations with the best specialists in Poland didn’t bring the good news we had hoped for. Their propositions were dramatic - amputating her left leg, preparing for a prosthetic leg. We couldn’t agree to have our daughter’s whole life ruined, just have one leg cut off and the other disfigured.
After all, she has two faulty, yet wonderful legs and new ones will not grow… that’s why we decided on finding help outside of Poland, and so we found Dr. Paley. The world’s best specialist on children with faulty legs.
After consulting him, we’re certain that this is the best decision to save our daughter from the wheelchair. Dr. Paley has saved many children with faulty legs, who, like Wiktoria in Poland, had been condemned to disability. Those children are now walking; we believe the same will happen to Wiki. We don’t want Wiktoria to be another person of disability, resigned to the good grace of others. We wish to give her health and a keenness for life without obstacles. Unfortunately, the biggest current obstacle is the cost, which we will not be able to to cover alone…
More than 1 million PLN (330.000 $)… yes, that’s not a mistake. That’s how much the health and future of our baby costs. The operation is scheduled for Grandmother’s Day, 2020, which, contrary to what it seems, is little time. One will do anything to help their child; starve for a month, „sell a kidney”, but it’s still not enough…
What’s needed is a crowd of good hearts, who will help fulfill our American Dream about Wiktoria. About a helpless girl from Lublin, saved from seemingly inevitable disability.
Agnieszka - mom.