The day the nurse called she asked simply, “Should I tell you now or do you want to pick them up and wait for your husband to come home?” The unmarked envelope sat on the table for the remainder of the day beckoning to be opened. When Michael got home from work, the Loughrans nervously opened it to discover that all the test results were “uneventful”.
Uneventful was very good news. The baby did not have a genetic disorder screened by the non-invasive test. So, the Loughran’s could take a breath.
Sex: Male THAT WAS GREAT NEWS!
Finnegan’s name was chosen years ago when they were pregnant with their first of three daughters. The Loughran’s celebrated! Their dream of having a son had come true.
“Finny” Loughran was welcomed into the world by his enthusiastic big sisters, his parents, and his extended family. The joy was so epic that it all but healed a family deeply wounded by the tragedy of losing their first-born daughter Sylvia due to undiagnosed causes when she was 14 months old.
For six months Michael and Jennifer and their daughters Eilish and Serafina were gloriously happy. Finny was not only adorable, but he had soft and tender nature that was drew people in. He had a fan club everywhere he went. Finny was so content to be held, snuggled and cradled that arms reached out begging to hold him. He loved the affection. So did his fans.
In December 2019, Finny was rushed to the hospital in respiratory distress where he tested positive Coronavirus Hku1 (not Covid-19). He was sent home the same day but was sick for weeks. During those weeks he had clearly declined and showed significant signs of low tone.
Low tone was one of the symptoms that his sister Sylvia also had before she passed. Over the next few months, there were many appointments and tests. It was an eye exam and the discovery of “Cherry Red Spots” that indicated he had one of a variety of degenerative lipid storage diseases. The next day a panel of tests were taken by the genetics department and on March 13th, 2020 the Loughran’s received the diagnosis of Tay-Sachs disease.
The diagnosis came a week before the New Jersey statewide shutdown causing the shutdown of all developmental services, non-essential medical care, as well as the childcare and education for all the children. Finny lost the open arms of physical contact with friends and family and the Loughran family were plunged into isolation during one of the most devasting times of their lives. Despite the tremendous impediment of the lock down, the local community has shown up for the family in ways that are breathtakingly kind, even if at a distance, and for that the Loughran’s are beyond grateful.
Infantile Tay-Sachs disorder is a genetic disease that was at one point believed to primarily affect people of Jewish descent, but the volume of cases among those of Irish descent has been documented over the years has found that 1 in 50 people of Irish decent are carriers. Tay-Sachs is caused by the absence of an enzyme that helps break down fatty substances called gangliosides which are typically flushed away in healthy developing brains. The buildup causes toxic levels in the child’s brain that affect the development and function of nerve cells. Babies born with Tay-Sachs disease appear normal at birth, and symptoms of the disease do not appear until the infants are about four to six months of age when they begin to lose previously attained skills, such as sitting up or rolling over. Children then gradually lose their sight, hearing and swallowing abilities, and usually die by the age of five.