The precious Shullanberger Family, that are close friends of ours, are going through a very difficult time following the diagnosis of their 2-1/2 year old daughter, Bryleigh, with MLD (Metachromatic Leukodystrophy).
Below is a brief description of the disease. For more information visit, www.mldfoundation.org
Metachromatic leukodystrophy (MLD) is a genetic disorder that affects nerves, muscles, other organs, and behavior. It slowly gets worse over time.
In the late infantile form, which is the most common form of MLD (50-60%), affected children begin having difficulty walking after the first year of life, usually at 15"“24 months. Symptoms include muscle wasting and weakness, muscle rigidity, developmental delays, progressive loss of vision leading to blindness, convulsions, impaired swallowing, paralysis, and dementia. Children may become comatose. Untreated, most children with this form of MLD die by age 5, often much sooner.
There is currently no treatment or cure for MLD. Late infantile patients displaying symptoms receive treatment limited to pain and symptom management.
Bryleigh was experiencing a delay in walking, that doctors attributed to a heart condition, and therefore underwent heart surgery in 2012, before the MLD diagnosis was made. When her condition did not improve following surgery, she underwent months of genetic testing and brain scans before the MLD diagnosis was made.
Bryleigh and her family; mother, Kaprice, father, Corbin and older brother, Brixton, live in New Braunfels, Texas. Bryleigh requires around the clock care and having both parents home to care for her is so important. We want the family to be together as much as possible, and since they are a single-income family, we decided to start a fund to try to make that possible to either send them on a family vacation and/or help with medical bills.
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