‘Let Them Be Little’ Raises Funds for Elmwood Park Brothers

by Alice Magdziak • August 5, 2011 • EventsComments (0)1716

A rare genetic disorder is a devastating diagnosis for any child and their family.  So, imagine what it’s like getting that diagnosis for both of your children.  That’s what happened to the Leiders, an Elmwood Park family, recently when their two sons went to several doctors for their sons’ unusual symptoms and tests came back positive for Mucopolysaccharidoses-2, or Hunter’s Syndrome.  That is a genetic storage disease caused by the body’s inability to produce specific enzymes used to break down and recycle materials in the cells. There are only about 330 known cases in the United States and only 6 in New Jersey.  Now you can see how rare it is for both boys to have this extremely uncommon condition.

Jason, 4, and Justin, 2, with their mom Deena

Children with Hunter’s Syndrome can have short stature, skeletal deformities, spine deterioration, joint stiffness, coarse/puffy facial features, developmental delays, mental retardation, unexpected seizures, premature brain failure, respiratory system problems, heart disease, carpal tunnel syndrome, the inability to walk, and recognize their surroundings usually before the age of 12, and loss of life by 15. MPS2 also has a tendency to attack and enlarge the internal organs, mainly the liver and spleen which can interfere with eating and breathing.

Letthembelittlex2.com is a fund-raising website for this Elmwood Park family to pay for their medical expenses.  We hope you can visit the site to donate or buy tickets to the BBQ or walk in their honor.

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