Condition: Metachromatic Leukodystrophy
City, State: Bend, OR
Club: Morning Star Christian School Sparrow Club Service Hours:
Date Adopted: 10/23/2013
Anabelle was born December 11, 2010. Her parents enjoyed watching Anabelle grow and change with each passing day. She was perfect by standards and was hitting all her milestones on time. So, when she suddenly began to fall behind around 18 months old, her parents were justifiably concerned.
Her parents took Anabelle to see a physical therapist hoping it would help. The therapist told them she might have Cerebral Palsy. A physician confirmed that diagnosis. The doctor said that it appeared she had a mild case and since they caught it early, with the proper treatment, she should grow out of it.
Over time, her symptoms went from mild to moderate to severe. Children with Cerebral Palsy are not supposed to get worse so Anabelles’s parents knew that something else must be wrong. In April of 2013, they again took Anabelle to the doctor. Following blood tests and an MRI, she was diagnosed with Metachromatic Leukodystrophy. Her body is missing an enzyme that breaks down “sulfatides.” Because her body is missing this enzyme, it is eating away at the white matter of her brain.
This illness will cause Anabelle to slowly lose all her body functions. She went from walking, to crawling, to rolling. She can now no longer sit, stand, walk, talk or eat on her own. She is beginning to lose her vision as well. Doctors say that children with this illness will live to be anywhere from 5-10 years old.
In the meantime, Anabelle spends her precious time with her loving family. She can still smile when her parents tell her a joke. They don’t know how much longer that will last but they cherish every moment. She must eat through a feeding tube as she can no longer chew. Just recently, Anabelle enjoyed her Make a Wish trip to Disneyland where she got to spend time with her favorite character, Mickey Mouse. She also loves to be played with and loves animals of any kind.
Sparrow cash raised for Anabelle will help pay for ongoing therapies, travel expenses for doctor appointments in Portland, and everyday living expenses.
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