Help Support The Santucci family!!
My name is Chrissy Gerolimos. My husband (Al Santucci) and I were married in 2007 looking forward to having happy and healthy family. Currently, we live in Fair Lawn, NJ with our 4 beautiful boys. Christian, whose 16, Angelo & Stefan identical twin boys who are 13 and Mario who is a big 8. They are just like ordinary boys; they love animals, super heroes, cartoons, video games. Christian was born healthy, happy, and very bright. He was verbally advanced when he was young. However, when he was 3 years old he started becoming sick frequently with ear infections, high fevers, frequent falls with bruising, and was frequently hospitalized. Medical professionals were unsure of what the cause was. After multiple appointments with the pediatrician, the eye doctor, neurologists, geneticists, blood work, and hundred of tests at the Children’s Hospital in Washington (CHW), we finally learned of Christian’s diagnoses. He was then 5 years old! He was diagnosed with Leukodystrophy/ POLR3A. We met with the team of genetic professionals at CHW to hear the devastating news and that there is no cure and this disease is TERMINAL. At this time , I was 6 months pregnant, and we learned that there was a 25% chance of our other children to have the disease. The twins Angelo and Stefan, were born healthy without any problems, but soon after were also diagnosed with Leukodystrophy/POLR3A. Mario, our youngest, has the gene, but is only a carrier. He is developing well at age 8
WHERE WE ARE AT NOW Christian has advanced disease; he is paralyzed, requires a wheelchair, tube feedings and is dependent on another for all of his care. He is no longer verbal and will become frustrated if he is unable to express his need. He suffers from tremors and leg and arm spasms In addition, he is on medication to control seizures. He still enjoys watching movies, listening to music, going for walks in his wheelchair, and being a practical joker. His twin brothers, Stefan and Angelo, have poor balance, poor hand eye coordination and tremors. Angelo and Stefan are now also wheelchair bound. They require help with simple tasks like dressing and feeding themselves and using the bathroom. Marios is not physically affected by the disease, but will continue to need support to help him grow and cope with the families life challenges and losses.
HOW ARE WE DOING We believe things happen for a reason, however, we are not sure what that reason is yet. We hope in the future we will be able to share more on this topic.
HOW YOU CAN HELP We need the help with funds to now pay our mortgage, utilities, Groceries and general life.
Al has the only income coming in, and when christian or the twins are sick and I need to be with them in Hackensack medical center or at home due to nurse shortage. Al can't work and has to help with the twins/christian. When this happens, bills get backed up and pile up, with no income coming in. Please give as little or as much as you can to meet our first goal of $10,000.
We can't do this without the help of others who understand, and we are so very grateful for those in our life and community who care. Thank you for taking the time to read some of our story. https://rarediseases.org/rare-diseases/leukodystrophy/#general-discussion