Tiny Sparrow Foundation | A Non Profit Organization » A Picture of Hope

Noah & Laine | Late Infantile Batten | Illinois

Meet Noah and Liane. These siblings are fighting Late Infantile Batten disease, a rare genetic disorder that has ruthlessly robbed them of their speech, balance, and mobility. Noah and Laine both began their lives as happy, energetic children, until they both suffered a seizure at the age of three and were diagnosed with this debilitating disease.

Their mother shared with us “Noah now has a feeding tube. He can neither walk, control his body, nor talk. Laine communicates and eats only with extensive assistance. She was so frustrated in the summer of 2011 when she lost her ability to walk, mostly because she could no longer keep up with her twin sister Emily. Meanwhile Emily continues to astonish us by doing new things every day, reminding us how far from “normal” her siblings have come. Noah and Laine will be forever simple and sweet. They will never see the complications of life. They will never have their hearts broken. They will never see their own kids get sick. They lose more of themselves with every passing month. Yet even as they slowly slip away, we are intensifying our efforts to battle LINCL-Batten disease. ”

Please wrap Noah and Laine and their beautiful parents in your thoughts. Pour your love onto Emily, who continues to be brave as she watches her siblings fight this unforgiving battle.

Noah and Laine, your sweet and tender smiles inspire us to find a cure.

Our Foundation is blessed by the gifts of the heart and from behind the lens from Tangie of Life Reflections by Tangie.

Simply beautiful! I can’t understand how illnesses like this exist.

jacqueline farnaus

Beautiful pictures of our daughter and family.Very poignant write up for a very tragic situation that we all try to make the best of.
Hugs to you all.
Mamo of Noah,Emily and Laine

Your email is never published or shared. Required fields are marked *