Madison's Leukodystrophy Journey

It is with a heavy heart I am writing this today. After nearly 3 years of uncertainty, our dear Madison has been officially diagnosed with a rare genetic disorder known as 4H Leukodystrophy. There is currently no treatment or cure for this "life-limiting" disorder, and it affects the cerebellum and myelination (white matter) of the central nervous system (brain). Consequently, multiple systems are affected, including motor function (balance/coordination), vision, tooth development, hormone development, speech, swallowing, bladder/bowel control, etc. The rate of degression is uncertain, but we do anticipate supportive measures will be needed in the future. Meanwhile, we are planning on traveling to the Children's Hospital of Philadelphia (CHOP), as this institution has one of the only Leukodystrophy Centers in the world and is a leader in the database/research for the disorder.

Would you consider donating to help our family as we seek treatment and support? As you can imagine, the challenges of this diagnosis and struggles in other areas has continued to increase. We appreciate any financial donation as well as any thoughts and prayers. God Bless! Monica and Joel Brown