Indian-origin family in Canada seeks $5.5 million for US gene therapy they hope will help their toddler with rare genetic disorder
Read the full story at Times of India
An Indian-origin family in Canada's Brampton is trying to raise $5.5 million to take their two-year-old son to the United States for a specialized gene therapy that they hope could transform his life after he was diagnosed with a rare genetic disorder. Mandeep Chandi and his wife Ramandeep are seeking funds for their son, Zorawar, who suffers from Aromatic L-amino Acid Decarboxylase (AADC) deficiency, a rare genetic condition that affects the nervous system and prevents the brain from producing an enzyme needed to make essential neurotransmitters.
The disorder affects the production of dopamine and serotonin, chemical messengers that play a crucial role in controlling movement and other bodily functions.At two-and-a-half years old, Zorawar has been unable to achieve basic developmental milestones such as sitting, walking and talking.Ramandeep Kaur, his mother, told CTV News that every day is a challenge for Zorawar. Several times a week, his eyes will stay rolled upward for up to 30 minutes, which is painful for him.
And he can't chew food. So he is still on a liquid diet.
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