Give Sisters The Access to Thrive
Organized by: Miryum Mochkin
Moussia and Yehudis are two sisters (age 11 and 7) living with a very rare metabolic disease, called CDG-GMPPB compromising the functions of every cell in their bodies. Muscular Dystrophy is one of the symptoms of CDG-GMPPB causing the girls to have muscle wasting and mobility fatigue. As of 2014 there are only 8 other reported cases worldwide with CDG-GMPPB and the girls are the only ones in the United States with this condition. This past August, Moussia and Yehudis underwent several weeks of intensive inpatient testing at the NIH (National Institute of Health) in Washington DC where the government is studying their disease. Because there is no predecessor to their condition and currently there is no known cure, the focus is on management of symptoms and trying to improve their quality of life as much as possible. Yehudis suffered her first seizure at the age of three years old and since then, her seizures have increased to over 100 episodes a day. To date, Yehudis has been on 14 different medications, tried numerous diets and been under the care of 6 different epileptologists. Yehudis continues to have seizures every day We are turning to you to invest in Moussia and Yehudis’ access to thrive! it is often a struggle for them to climb up and down the stairs of their home, to get to their bedrooms. The bathroom layout is very challenging for them to independently access the shower. The narrow corners and hallways make the girls more prone to injury as they easily stumble and fall from muscle fatigue or seizures. By modifying our new home, we can create a layout to fit our daughter’s needs. Constructing their bedrooms and bathroom on the first floor, widening the hallways and placing furniture and fixtures strategically within their reach will greatly improving their quality of life for now and for the long term. Help us give Moussia and Yehudis the gift of accessibility to blossom and grow in their independence enabling them to share their gifts with the world. Dollar for Dollar will be matched by a very generous donor!