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Liam’s Medical Expenses

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Liam was born on January 12, 2018 and mom, dad, and his 2 older brothers couldn’t have been happier to finally have him here! He seemed to be a very healthy baby but things changed when he was about 2 months old. We ended up in the ER when we noticed his left leg was very swollen. The next few months were spent seeing multiple doctors trying to figure out what was wrong. In July 2018, we seen a geneticist at the University of Iowa Hospitals. During this appointment we did genetic testing and 6 weeks later we got the results that he has Beckwith-Wiedemann Syndrome. Beckwith-Wiedemann Syndrome is a very rare genetic disorder that occurs in 1 in 11,000 children. This syndrome causes Liam to have a 16% higher chance of getting cancer and it also has caused his entire left side to be bigger than his right, some enlarged abdominal organs, an enlarged tongue, and obstructive sleep apnea. As he gets older, more issues may come up but it is hard to say what. We do ultrasounds and bloodwork every 6 weeks to 3 months to watch his organs and look for tumors. We see doctors in many departments at the university of Iowa to monitor everything. Liam also has many types of therapy, including physical, occupational, speech, and a type of play therapy, to help him learn to do daily tasks. Because Beckwith-Wiedemann is such a rare syndrome, doctors here can only do so much and we have the opportunity to go see the top doctors in Philadelphia to come up with a plan and discuss surgery options for Liam. With all of his medical needs, and already having had 2 surgeries and a third coming up, mom and dad are having to take a lot of time off work and medical bills are piling up quickly and they will continue to do so as this is something that he will have for the rest of his life.

Organizer

Megan Reuter
Organizer
Monticello, IA

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