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When Jessica was about 4 months old jess started to get stiff in all her joints. All the doctors said it was due to the surgery and also due to the reflux . At six weeks when she aspirated we send jess for some physio and did daily exercises with her. The visits to the hospitals and doctors continue on a regular basis.
At the age of six months Jessica was yet again admitted to the hospital due to her feeding. The doctors ordered an MRI scan and found out that the front section of the brain did not grow properly. Jessica was very upset and was crying a lot. The doctors and specialist gave her some rivortril see if it could calm her. Jessica went into a trans and lost all her ability to smile and to focus. Jessica never recovered from this. Jessica was spend to a hospital that can test for epilepsy. She was at the hospital for about 7 days. No epilepsy was noted at the stage.
We were send to another specialist when he told us he knows what she has got but will do tests first. The blood samples where send to London for testing for a disease non of us have ever heard about Krabbe. The results came back and was confirmed that Jessica has got early Infantile Krabbe Leukodystrophy. Till today Jess is in and out of hospital.
-Francina Jansen Claassen
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