URGENT! She is going to die without a transplant! Can we save her in time?
LIVER TRANSPLANT is THE LAST RESORT.
Ends on: 02 November 2023
18.10.2023 odbył się przeszczep rodzinny w klinice Saint Luc w Brukseli. Operacja trwała 9 godzin, wszystko odbyło się tak jak zaplanowali chirurdzy – bez komplikacji. Dawca oraz biorca czuja się dobrze. Lenka bardzo szybko doszła do siebie, po 2 tygodniach wyszłyśmy ze szpitala. Teraz zostajemy 3 miesiące w Belgi, ponieważ mamy kontrole 3 razy w tygodniu.
Dziś z uśmiechem wkraczamy w nowe życie – w życie, o którym marzyliśmy odkąd Lenka się urodziła❗️ Właśnie wyszliśmy ze szpitala i meldujemy się w naszym nowym belgijskim mieszkanku ❗️❗️ Jesteśmy ogromnie dumni z tego jak nasza córeczka świetnie poradziła sobie przez ostatnie tygodnie! Były to dni bardzo trudne, zarówno dla Niej jak i dla nas rodziców. Jednak dzięki ogromnej życzliwości, empatii oraz profesjonalnemu podejściu lekarzy i pielęgniarek do pacjenta, wiedzieliśmy, że Lenka z dnia na dzień nabierze sił – i tak się stało! Wyniki z krwi są bardzo dobre, a wątroba działa bez zastrzeżeń!
Lekarze są zdumieni jak szybko mała pacjentka doszła do siebie, dlatego nasz pobyt w szpitalu nie trwał 4 tygodnie jak wstępnie zakładano. Chirurdzy jednomyślnie stwierdzili, ze Lenka dostała idealna wątrobę od wujka! Nie mamy słów wdzięczności za to jaki otrzymała od Niego dar. Lenka obecnie pozostaje na lekkiej diecie, aby jej organizm przystosował się do nowego jedzenia. Dziękujemy Wam z całego serca, za wszystkie modlitwy, za dobre słowa, za wsparcie, za pamięć i za to, że Lenka mogła przejść operacje w światowej Klinice Saint Luc w Brukseli. Niemożliwe przy Was nie istnieje! Jesteście niesamowici!
Mama Lenki - Monika
Living-donor liver transplant in Belgium
Our little daughter is very sick, and her disease is a sneaky, silent killer that might cause irreversible damage to her body. Currently, the only solution is a living-donor liver transplant! We must act fast - our daughter's life is in great danger!
Lena was born on August 13, 2019. The first moments with a newborn are usually long-awaited and filled with joy and happiness. Unfortunately, it didn't happen for us.
Two days after we left the hospital with our beautiful, healthy baby girl and returned home, where she melted everyone's hearts, especially her older brother's, she developed an eating disorder - rejecting her mother's milk. She also became sleepy and lethargic. We couldn't wake her up for feeding. She was getting weaker hour by hour. We were helpless!
When the Institute of Mother and Child called on the 5th day to check how our daughter was doing and heard the sad news, they immediately referred her to the NICU in Rzeszów. The doctors were already waiting for us! The first thing they did was inserting a central venous catheter to rinse out the toxins.
An ambulance transferred her to the Institute of Mother and Child in Warsaw in an incubator, where she has been treated since.
Lena's condition was so critical that we baptized her in the hospital in case something happened to her...
We started to ask ourselves questions: what was going on?
Was she going to survive? If yes, would she develop properly and have a happy childhood? Why her? What would happen next? Hours spent in a car that followed an ambulance at high speed were filled with tears and fear. It is how our story with MSUD has begun.
Our lives changed forever.
The diagnosis we received - maple syrup urine disease (MSUD) - is a rare metabolic disorder affecting only 30 people in Poland.
This genetic disorder is characterized by a deficiency of an enzyme that is required to break down three branched-chain amino acids (BCAA): leucine, isoleucine, and valine, in the body. As a result, they accumulate abnormally, which causes body intoxication, damage to the central nervous system and brain, and coma. If untreated, it can cause death.
Lena must follow a strict, low-protein diet for the rest of her life to avoid intoxication. She can only eat fruit, vegetables, special foods, and protein equivalent formulas. The most crucial is to provide Lena with a proper amount of calories at a specific time of the day, regardless of whether she is hungry. However, the diet itself is not enough.
Unfortunately, even a minor infection, virus, stress, insufficient calorie intake, and climate change can cause amino acid imbalance and eventually, brain damage.
The disease took over in the first couple of months of her life. Lena fell ill regularly. Constant infections, fever, vomiting, and poor blood test results were often the reason for week-long hospital stays. Due to her loss of appetite, the feeding took 2 hours! She required meals every 3 hours, so even if the food from the previous meal was still indigested, she had to eat again to avoid irreversible brain damage... Due to her constant vomiting, we added an extra dosage of glucose to her formula to decrease the food portion and allow proper calorie intake.
Lena was fed through a nasogastric tube until she turned one.
She was also qualified for percutaneous endoscopic gastrostomy (PEG), a surgery to place a feeding tube in the stomach to allow nutrition. Thankfully, we avoided it! Lena started eating two weeks before the procedure, thanks to our persistence, patience, and daily efforts!
Today she attends kindergarten, has made friends, plays, sings songs and nursery rhymes, dances, learns to ride a bike, and her overall development is correct. On the surface, she seems healthy. However, every day we are scared she won't eat the fixed portion of food or return home with a fever. It all might be life-threatening to her!
Lena is a very smart girl. Her smile and joy are contagious! She has proved she has strength and perseverance many times already. We want her life to be free from constant fear. Unfortunately, we cannot control the amino acid level as often as we want to protect Lena from falling sick.
Lena's disease is terminal. We can ease its symptoms, though!
We have a tough decision to make. However, a new liver has enzymes that will control Lena's metabolism and offer her a chance for a better life.
MSUD is an unpredictable and dangerous disease. It is a sneaky, silent killer that can attack anytime, causing irreversible damage to Lena's body and even death.
Someone once told us that "one day, Lena will repay you for the support she has received from you". Those words comfort us and give us hope.
Our daughter teaches us patience, persistence, caution, and appreciation of every little thing. It is a reason we want to fight for the best life possible for her. We have decided upon a living-donor liver transplant at University Hospital Saint-Luc in Belgium. Currently, we are waiting for the cost estimate - a price we must pay for our daughter's life without fear.