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Judgment
Prathiba M. Singh, J. (Oral)
This hearing has been done through hybrid mode.
Submissions have been heard on behalf of Cure SMA Foundation by ld. Senior Counsel Mr. Anand Grover, duly assisted by Ms. Alpana Sharma and Ms. Archana Panda, who are office bearers of Curea SMA Foundation, as well as mothers of children suffering from Spinal Muscular Atrophy (‘SMA’). The same have been concluded.
Directions
In W.P.(C) 5395/2021, vide order dated 27th May, 2024, it was directed as under:
“15.Insofar as the Petitioner in W.P.(C) 5395/2021 is concerned, Mr. Oberoi, ld. Counsel for AIIMS, submits under instructions that the Petitioner has a Uniform Disability Identification Number (‘UDIN’). In view thereof, the concerned doctors at AIIMS have already started the process for the procurement of a wheelchair, which should be delivered to the child within a period of 15 days. Ordered accordingly. Let the wheelchair be provided to the petitioner within 15 days.”
The Court is today informed that the wheelchair has not yet been provided, as the one which was provided was not accepted by the patient.
The Court has heard submissions made by Dr. Madhulika Kabra (AIIMS), Mr. Oberoi, ld. Counsel, ld. Amicus Ms. Trehan, and the grandfather of the child, who is a practicing lawyer.
Though the Rs.5 lakhs have already been sanctioned by the Government of Uttar Pradesh, the said amount has not yet been utilized because a suitable wheelchair has not yet been identified. It is also submitted that after it is identified, the tender process would have to be followed for the same to be procured.
This Court directs that since there has been substantial delay in providing the wheelchair to the Petitioner, let the patient/his family identify the wheel chair to be procured. Upon the same being identified, the same be procured by AIIMS without going through the tender process, as the same may further delay the procurement and the child is in urgent need of the wheelchair.
Vide order dated 12th July, 2024, this Court directed as follows:
“8.In view of the submissions made by the ld. Amicus Mr. T. Singh Dev, it is directed that all the medical records of Master Rakshan, through his father-Mr. V. Maniknandan be now transmitted to Mr. Oberoi, ld. Counsel for the AIIMS and Ms. Madhulika Kabra at the email addresses mentioned in paragraph 5 of the previous order dated 27th May, 2024 which are again set out below: [email protected] [email protected]
9.Let the said medical records be transmitted within one week. Dr. Kabra shall then assemble a team to examine the medical records, and if the doctors believe that physical examination of the patient/child is necessary, upon being informed by Dr. Kabra, the child shall travel to AIIMS, Delhi with the father. By the next date of hearing, let a status report be placed on record by AIIMS, Delhi, detailing the manner in which the child’s medical conditions can be addressed.
10.Ld. Amicus submits that the child is suffering from epileptic attacks. It is directed that since the child is suffering from epilepsy, if the doctors from AIIMS, Delhi wish to meet the child virtually, the same may be organized through video conferencing.”
In CONT.CAS(C) 678/2024 & CONT.CAS(C) 687/2024 , it is submitted on behalf of ld. Amicus Mr. T. Singh Dev that consultation for the child with AIIMS has taken place on 20th July, 2024. The soft copies of the MRI scans are to be handed over to the doctors at AIIMS. Additionally, Dr. Kabra and Dr. Shefali confirmed that the child has been examined.
It is further stated that treatment plans shall be emailed to the father today itself. The father shall also send copies of the MRI scans to the doctors at AIIMS within a period of one week.
In W.P.(C) 4539/2023, a status report has been handed over by ld. Counsel for AIIMS Mr. Oberoi that the Petitioner is amenable to Exon 51 Skipping. The said status report is taken on record.
List these matters for further hearing on 1st August, 2024 at 2:30 p.m.
These are part-heard matters.