Llittle Marie's Fight Against Alagille Syndrome

Despite her young age, my daughter Marie is already suffering as a adult. At 15 months, my baby has Alagille syndrome and we, parents need very urgent help to take care of her.

Despite her young age, Marie already suffering as a adult. At 15 months, this baby from San Francisco has Alagille syndrome associated with pulmonary stenosis, among other health complications. This is a genetic disease rare that seriously affects many organs - in the case of this Warrior Princess its the liver, heart and lungs - and which little is known.

The Alagille syndrome is a rare genetic disease that affects seriously many organs, particularly the liver and heart, can be fatal. This disease is characterized primarily by poverty bile and hepatic ducts, and their prognosis is variable and directly depends on the severity of the impairment liver and heart. In Alagille syndrome occurs bile accumulation in the liver, that prevents you from working normally to eliminate waste from the blood stream. The result is the start of most of the symptoms, which are still manifest in childhood and the severity of which depends on the individual's body. In some cases, symptoms may not be noticed and the damage is not severe, in other cases it is necessary to transplanting effected organs. Can cause prolonged jaundice in newborns. Holders of Alagille syndrome usually have the skin yellowish spots in the eyes, bones of the spine in the form of butterfly, heart problems, developmental delay, itchy by the body and cholesterol deposits in the skin.

Accompanied by me, without job,  and my husband Peter and professionals health, which "have been relentless," Marie was only 15 months waging a daily struggle, since the birth, that only those who handles the situation closely know and who don't has no idea how complicated it is.

Since it was diagnosed the syndrome to our daughter, we saw life to take a 180-degree turn. Our lives began to be summed up in one day a time "wherein in the end, precisely, every day only smile of our 'little star' is already a victory. In the eyes of an ordinary citizen, Marie looks like a baby as many others: babbles jokes, she is aware of everything and to 'shoot kisses' But we are facing an extremely syndrome difficult to treat. Marie usually have a lot of itching in the body, levels of too high cholesterol and has had much skin yellow (prolonged jaundice). Onozoterapia resulted in "some improvements"

Today, Marie is making a treatment ozone, to increase the amount of oxygen in blood, which has resulted in "some improvements" But, over time, if her immune system allows, will have to make an angio-CT, heart surgery, one MRI head. And besides, need to do a liver transplant, which "may be from one day to the another if the organ collapse. " Given all this, the entire support is in fact little to face a lot of expenses, that, in a few months, including food, visits to hospitals, medicines / vitamin, etc .. A value unaffordable for us to keep up with she in the treatments, medical examinations and consultations.

This time, is ongoing a solidarity campaign, to not only raise money for food, visits to hospitals, medicines / vitamins but also for diapers, wipes, wafers, Enfamil milk, natural yogurt, clothes, toys etc ..

You can find several fund-raisers and more info here:



Categories: Healthcare, Child Care, Fund Raising

Tags: Alagille, care, child, children, death, Help, hospital, life, little, sick, sickness, syndrome