01/06/2023
Hello, everyone!
Our is now fighting Alagille Syndrome.
October 2022, we were discharged from the hospital with the diagnosis of Neonatal Hepatitis. Initially, it was Biliary Atresia. She underwent surgery (for Kasai) but doctors performed Cholangiogram and liver xray, they concluded that her case is not BA. Praise God!
For almost 8 months, she has been taking medicines which we hoped would clear her jaundice and liver issues and later, clear her from the illness.
Despite the medicines she’s taking, Fynn remained jaundiced and her bilirubin levels are still up and down. We were told that cases of Neonatal Hepatitis would clear between 2-6 months but it didn’t happen to Fynn.
We were then advised to have her undergo Genetic Test. So we did. Her blood sample was sent to US for the panel test. 3 weeks after, the result: suggestive of 3 disorders. To further discuss, we met with her geneticist. We were advised to undergo series of tests to confirm what Fynn’s illness is.
After undergoing x-ray of spine and 2D echo, it has been confirmed that Fynn has Alagille Syndrome.
Alagille syndrome (ALGS) is a rare genetic disorder that can affect multiple organ systems of the body including the liver, heart, skeleton, eyes and kidneys. Common symptoms, which often develop during the first three months of life, include blockage of the flow of bile from the liver (cholestasis), yellowing of the skin and mucous membranes (jaundice), poor weight gain and growth, and severe itching (pruritis). Additional symptoms include heart murmurs, congenital heart defects, vertebral (back bone) differences, thickening of the ring that normally lines the cornea in the eye (posterior embryotoxon) and distinctive facial features.
ALGS happens to 1 in 70,000 babies.
Fynn continues to be monitored and managed by her doctors; pedia, pedia gastro, surgeon, cardiologist. We still do not know if she will have additional doctors given her condition and the needed monitoring.
We remain hopeful that Fynn will grow to be a strong and healthy kid despite her illness and that she will not need a liver transplant. Still— we lift everything to God. We believe His plans will never harm Fynn, our family.
Our goal is to support all her needs, her medication, monitoring tests, her well-being. Shower her with all the love, not because she’s sick but because we truly love her.
As the mom, I still cry, I still feel sad but I have already learned to accept it, slowly. Whenever I feel sad, looking at her, thinking what might happen— i’d go back to God’s promise that He is in charge.
It’s not easy but with God’s grace, we receive peace and strength to battle this illness. Fynn is our daily reminder of God’s kindness and faithfulness.
We pray that she will remain strong, healthy, that her heart defect will not progress and she will thrive with her native liver. We pray that as her parents, we be given good health as well and plenty of strength so we could take care of her and her sister and give them all they need as they grow up.
We continue to ask for your prayers for Fynn. Thank you for all the Love you have been showering her.
Everyday, we are grateful for Fynn’s life. She is a blessing. She is our miracle. ❤️
Mahal na mahal namin si Fynn. ❤️
