Our son baby Mahdi has motor delay, muscle weakness, hypotonia, tongue fasciculation, absent DTR and regression of motor milestones. He has been diagnosed with a rare genetic condition called SMA at Al Jalila Children’s Speciality Hospital in Dubai (UAE) by Dr Haitham Elbashir who is a Consultant in Paediatric Neurorehabilitation. This diagnosis was confirmed as SMA with Homozygous deletion of SMN1(0 copies) and 2 copies of SMN2. This diagnosis was made on 10/06/2021 and the medical report is attached here.
As Mahdi’s parents we are in a very desperate situation. We are living day by day, praying and hoping we can save our baby’s life, putting our own feelings of severe depression and anguish to one side as we battle to stay brave to help save Mahdi’s life.
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