Watch heartwarming video of him celebrating Christmas with family:
Video Credit: Prayer Warriors for Timothy
A boy of 6 years is reportedly denied the experimental drug which his parents say that it could prolong life.
Named as Timothy Donohue, the boy was just two years old when he was diagnosed with Leigh’s syndrome. Talking about this syndrome, it happens to be a rare neurodegenerative disorder.
This disease is anticipated to kill Timothy, and can also likely kill him even before he gets into his teen-age. Jamie and Terry, the parents say that this drug has shown promising prominence in the clinical trials. And therefore, it might give him a couple of years more to live.
Nevertheless, the manufacturers of this drug mention that its available supply has been issued by the parent who has received the treatment. And currently, it is not issuing any further. For the parents, as long as their child is fighting, their battle is still going on.
The geneticist has said to his parents that he has been suffering from alcohol syndrome. As his condition never saw any improvement, the hand tremors eventually became the full body tremors.
Another MRI from Orlando carried forward the second test of the baby at 2.5 years. Upon multiple fights, the test got approved that further gave a confirmation about the syndrome.
Leigh’s syndrome (as the name suggests) happens to be a severe neurological disorder which is caused by the mutation in more than seventy-five genes.
The genes associated with this syndrome are found in mitochondria (the cell’s powerhouse). It converts food to energy. However, with the genetic defect, it gets prevented to do its job.
This disease’s onset can begin anywhere from 3 months to 2 years. It includes the loss of motor skills like poor sucking ability and head control.
The disease has reportedly affected 40,000 children over the world. However, in recent years, there’s no cure for the disease. But the treatments currently associated with this disease involve mostly therapies pertaining to vitamins as well as supplements.
Timothy is recently under hospice; however, the drug might not extend his life. The family considers a write-up campaign in order to help in persuading BioElectron for letting Timothy try this particular drug.
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