Dinner to benefit 2-year-old with multiple medical needs
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Facing a single medical diagnosis is challenging for anyone, but when a child receives multiple complex conditions, the battle becomes monumental -- requiring an entire community to rally behind a family on the long journey ahead.
That is exactly why the community is coming together to host a special spaghetti dinner benefit for Liam, a brave boy who has just turned 2 years old.
Hessel Valley Lutheran Church, a congregation known for its long history of stepping up to support neighbors in times of need, will hold a spaghetti benefit dinner for Liam on Saturday from 3 to 6 p.m. or until sold out. This is a drive-through, pick-up only benefit served from the bottom of the driveway at 166 Hessel Valley Road, Sugar Grove.
The cost for the dinner is by donation with all proceeds going to the family.
Born five weeks premature, Liam has had significant medical complications since birth. Severe feeding and digestive difficulties has caused a dependence for much of his nutrition through a G-tube/GJ-tube. He has required specialized formula, carefully controlled feeding rates, and thickened oral feeds because of his swallowing and aspiration concerns among many other related conditions.
Due to a laryngeal cleft, swallowing difficulties, and aspiration risk, Liam has experienced repeated respiratory illnesses and pneumonia. He has also been diagnosed with asthma and central sleep apnea. His oxygen levels can drop while he sleeps, requiring close monitoring.
In addition, Liam was recently diagnosed with level 2 Autism Spectrum Disorder, and continues to work through developmental challenges. He suffers from seizure-like episodes. Having undergone multiple surgeries and procedures related to his laryngeal cleft and feeding difficulties, Liam has also required G-tube/GJ-tube procedures and recently underwent salivary gland Botox injections to help with secretion management and aspiration concerns. He also is expected to undergo tonsil removal.
Genetic testing recently identified a pathogenic mutation in the CRELD1 gene. Because this is a relatively new finding for Liam, his doctors are pursuing additional genetic testing and evaluation to better understand what this mutation means for him and how it may affect his health and development throughout his life.
Liam requires ongoing care from multiple specialists and participates in therapies including Early Intervention and occupational therapy. His care involves his parents, nurses, therapists, and numerous medical specialists, with frequent appointments, procedures, and hospitalizations.
His medical needs require 24-hour care and monitoring, and his family continues to travel for specialized medical care and evaluation.
The family is sincerely thankful for the generosity and compassion shown to help them navigate this ongoing medical journey.
Anyone unable to attend but still wishes to donate can send checks payable to HVLC with "Liam" in the memo to Hessel Valley Lutheran Church, 166 Hessel Valley Rd., P.O. Box 7, Sugar Grove, PA 16350.