By: Reilly Buselli
Lucas, born seemingly healthy, was diagnosed with Alagille Syndrome at seven weeks old. By six months old, he needed a feeding tube pump and IV pump with him, making it hard for his family to take him to doctor visits, take him outside, or even just move him around the house. His family was using a cardboard box to carry around his feeding pump and IV pump and had reached out to the community asking for a more permanent solution. It caught the attention of Mrs. Elders at Wallenpaupack Area High School who took his dilemma to the Engineering Technology program. Students in the program were excited at the challenge to solve a real-life problem with the skills that they had been learning. They quickly got to work modifying a backpack that could easily house his IV and not fall over when set down. Within a week, it was delivered to Lucas’ doorstep with a note from the students who created it. Lucas’ family did not even know that the bag was being made. His family was shocked to have received the bag so quickly after reaching out for help and was so grateful at how mobile it allowed them to be with Lucas.
Lucas’ condition is called Alagille Syndrome. This incredibly rare genetic condition, which affects one in every 70,000 births, is unknown even to some medical professionals. It can affect many parts of the body, most often the liver, heart, brain, kidneys, eyes, and bones. In severe cases, it results in the need for a liver transplant. This was unfortunately the case for Lucas. When someone has this condition, their bile ducts deteriorate progressively which causes buildup of bile in their liver, which can cause liver disease.
At eight months old, Lucas received the life changing gift from a living donor. Nearly eight months post-transplant, Lucas has graduated from the feeding tube and IV and has been absolutely thriving. He is 18 months old now and has begun to walk on his own, dance, babble, and enjoy foods by mouth. Lucas’ family would like to thank his team both at the Children’s Hospital of Philadelphia and at home for helping him get where he is today. His family is also grateful for all the support they received from the community during Lucas’ recovery. They received all kinds of meals, donations, and gifts that made this incredibly tough time that much easier for them. Christine, a Wallenpaupack graduate and Lucas’ mom, comments that when families are in times of crisis, any support they receive is appreciated, whether they ask for it or not. Even the smallest gestures can make a big difference.
Throughout this tough journey, Lucas’ family has lived by the strong but simple motto: hope over fear. The family chose to celebrate the small milestones and progress along the way instead of stressing over what may come. Living with this mindset allowed them to put aside their worry and focus on the joyful moments that the celebrate today, watching Lucas be able to walk, talk, and thrive.
Lucas’ family has been eternally grateful for all of the support that they received from the community, especially from the students who donated their time modifying Lucas’ backpack without asking for anything in return. Lucas’ story is a beautiful reminder of what community really means. It means coming together to support someone when their world has been turned around. It means letting someone know you care about them, and you’re there to listen to what they’re going through. It means doing whatever you can to bring hope to someone during a time of fear.
