Long-Term Medical Support and Growth Hormone Treatment for Children,

Date: Prepared by: April 20, 2018 Stephney Minerva Fernando I. Demographic Information 1.City & Province: and Matara, districts, Southern Province, Sri Lanka 2. Organization: Real Medicine Foundation, Sri Lanka (www.realmedicinefoundation.org) 3. Project Title: Long-Term Medical Support and Growth Hormone Treatment for Children 4. Reporting Period: January 1, 2018 – March 31, 2018 5. Project Location (region & city/town/village): The cities of Tangalle, , and Matara and their villages of Seenimodera, Moraketiara, Angunakolapelessa, and Kamburugamuwa; and Matara District; Southern Province; Sri Lanka 6. Target Population:

4 children with congenital health conditions affecting growth hormone production and cholesterol modulation:

Name Province District Town Village 1. Madumekala Ubeywarna Southern Province Hambantota Tangalle Seenimodera 2. Gayan Madushanka Southern Province Hambantota Embilipitiya Angunakolapelessa 3. Madura Madushanka Southern Province Matara Matara Kamburugamuwa 4. Tharindu Hasanga Southern Province Hambantota Tangalle Moraketiara

II. Project Information 7. Project Goal:

Provide long-term medical support and treatment to children suffering from congenital health conditions affecting growth hormone production and cholesterol modulation.

8. Project Objectives:

Coordinate and manage a system in order to: • Deliver treatment to the children • Provide medical consultations • Ensure patient compliance to treatment protocols to optimize the children’s chances for growth and maximum health benefits

9. Summary of RMF-sponsored activities carried out during the reporting period under each project objective (note any changes from original plans):

• Organized and held 3 monthly meetings for the months January, February, and March 2018 • Collected information from the children about their treatment and progress at the monthly meetings

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• Provided traveling expenses and nutritious food packages for the children and their families • Gave each of the 4 children a food parcel, worth Rs. 2,199/= each. The food parcels were distributed by Mr. Nishantha Sandakelum and Mrs. Stephney Minerva Fernando for the months of January, February, and March 2018.

Month Date Time Venue Day JANUARY 94th Meeting 1/27/2018 No. 62 ‘’Ben-Mina’’ Last Saturday of FEBRUARY 95th Meeting 2/24/2018 10:00 AM Medaketiya, Tangalle, every month MARCH 96th Meeting 3/31/2018 Sri Lanka

Patient 1: Madumekala Ubeywarna

JANUARY 2018 • Madumekala is a 23-year-old young woman. She did not receive 5 vials of growth hormone (GH) for the month of January. • Dr. Muditha Weerakkody, a consultant endocrinologist, prescribed Progynova as Madumekala’s new medication for menstruation instead of Climen. Madumekala has been on this new medication for three months with no complaints. The dosage is 1 tablet every day. Her weight and height have increased. • Madumekala’s bone age is 13.5 years. It is below her chronological age. Madumekala was treated by Dr. Manilka Sumanthilaka, a consultant endocrinologist. He again referred Madumekala to Professor Sujeewa for further observation, as the medical consultants believe she should stop the growth hormone therapy. • Madumekala now has to visit the Karapitiya Teaching Hospital in once a month, but she was not able to go in January. She will visit the clinic at Karapitiya on February 6th. • Madumekala’s sodium valproate dosage has stopped, but other medications continue. • Madumekala’s food parcel was changed slightly; instead of red rice, she is given more milk powder, salmon, and cheese. This change makes the food parcel easier for her to take to Galle.

FEBRUARY 2018 • Madumekala is a 23-year-old young woman. She did not come to the meeting with her mother. She did not receive 5 vials of growth hormone (GH) for the month of February. • Dr. Muditha Weerakkody, a consultant endocrinologist, prescribed Progynova as Madumekala’s new medication for menstruation instead of Climen. Madumekala has been on this new medication for three months with no complaints. The dosage is 1 tablet every day. Her weight and height have increased. • Madumekala’s bone age is 13.5 years. It is below her chronological age. Madumekala was treated by Dr. Manilka Sumanthilaka, a consultant endocrinologist. He again referred Madumekala to Professor Sujeewa for further observation, as the medical consultants believe she should stop the growth hormone therapy. • Madumekala now has to visit the Karapitiya Teaching Hospital in Galle once a month. She visited on February 6th. • Madumekala’s sodium valproate dosage has stopped, but other medications continue. • Madumekala’s food parcel was changed slightly; instead of red rice, she is given more milk powder, salmon, and cheese. This change makes the food parcel easier for her to take to Galle.

MARCH 2018 • Madumekala is a 24-year-old young woman. She did not come to the meeting with her mother. She did not receive 5 vials of growth hormone (GH) for the month of March. • Dr. Muditha Weerakkody, a consultant endocrinologist, prescribed Progynova as Madumekala’s new medication for menstruation instead of Climen. Madumekala has been on this new medication for three months with no complaints. The dosage is 1 tablet every day. Her weight and height have increased. • Madumekala’s bone age is 13.5 years. It is below her chronological age. Madumekala was treated by Dr. Manilka Sumanthilaka, a consultant endocrinologist. He again referred Madumekala to Professor Sujeewa for further observation, as the medical consultants believe she should stop the growth hormone therapy. • Madumekala now has to visit the Karapitiya Teaching Hospital in Galle once a month, and she went to the clinic at Karapitiya during March. • Madumekala’s sodium valproate dosage has stopped, but other medications continue.

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• Madumekala’s food parcel was changed slightly; instead of red rice, she is given more milk powder, salmon, and cheese. This change makes the food parcel easier for her to take to Galle.

Monthly Cost of Food Parcel Expenditure for the Month Rs. 2,199/= Rs. 2,199/= + Travel Fee

Madumekala’s Detailed Chart: JANUARY, FEBRUARY, and MARCH 2018 MONTH Date Obtained GH Height Weight Given Food & Travel Expenses JANUARY -- -- 142.9 cm 28 kg JANUARY 27, 2017 FEBRUARY -- -- 142.9 cm 28 kg FEBRUARY 24, 2017 MARCH -- -- 142.9 cm 28 kg MARCH 31, 2017 TOTAL 0 Vials

Patient 2: Madura Madushanka

JANUARY 2018 • Madura received 4 vials of growth hormone (GH) for the month of January. • He had attended school and private classes and completed the Advanced Level Exam twice. At the moment, he is taking a computer course as well as learning the Japanese language. • As Professor Sujeewa requested, Madura is now attending the clinic for his kidneys and taking medication as well. • His mother is very much concerned with his progress, and the medical authorities at Karapitiya Teaching Hospital are very satisfied with her.

FEBRUARY 2018 • Madura received 4 vials of growth hormone (GH) for the month of February. He takes 14 clicks per day. • He had attended school and private classes and completed the Advanced Level Exam twice. At the moment, he is taking a computer course as well as learning the Japanese language. • As Professor Sujeewa requested, Madura is now attending the clinic for his kidneys and taking medication as well. • His mother is very much concerned with his progress, and the medical authorities at Karapitiya Teaching Hospital are very satisfied with her.

MARCH 2018 • Madura received 4 vials of growth hormone (GH) for the month of March. He takes 14 clicks per day. • He had attended school and private classes and completed the Advanced Level Exam twice. At the moment, he is taking a computer course as well as learning the Japanese language, and he looks forward to obtaining suitable employment. • As Professor Sujeewa requested, Madura is now attending the clinic for his kidneys and taking medication as well. • His mother is very much concerned with his progress, and the medical authorities at Karapitiya Teaching Hospital are very satisfied with her.

Cost of 1 Vial Monthly Required Vials Monthly Cost of Food Parcel Expenditure for the Month Rs. 15,000/= 4 Vials Rs. 2,199/= Rs. 62,199/= + Travel Fee

Madura’s Detailed Chart: JANUARY, FEBRUARY, and MARCH 2018 MONTH Date Obtained GH Height Weight Given Food & Travel Expenses JANUARY 1/12/2018 2 Vials 148 cm 39 kg JANUARY 27, 2018 1/25/2018 2 Vials FEBRUARY 2/15/2018 2 Vials 148 cm 39.3 kg FEBRUARY 24, 2018 2/23/2018 2 Vials MARCH 3/9/2018 2 Vials 148 cm 39.3 kg MARCH 31, 2018 3/22/2018 2 Vials TOTAL 12 Vials

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Patient 3: Gayan Madushanka

JANUARY 2018 • For the month of January, Gayan did not receive any vials of growth hormone (GH). After observing the progress of Gayan’s height, Professor Sujeewa had instructed to stop therapy for him two years before, in February 2016. • Gayan visited the clinic at Karapitiya on January 11th to get the Testoviron injection. His Testoviron injection started at 50 ml in April 2013; it increased to 125 ml in August 2016; it again increased to 250 ml in October 2017. • Gayan was treated by Dr. Muditha Weerakkody, a consultant endocrinologist, who increased Gayan’s injection as well as thyroxine dosage from 100 to 150 mg per day. Other medication is continuing as well. • Gayan has to visit the clinic at Karapitiya after 3 months, but he has to receive the Testoviron injection every month. • Gayan was admitted to Karapitiya Teaching Hospital on January 24th to have an MRI scan, which was conducted on January 25th. • Gayan is currently working at a tailoring shop as a helper.

FEBRUARY 2018 • For the month of February, Gayan did not receive any vials of growth hormone (GH). After observing the progress of Gayan’s height, Professor Sujeewa had instructed to stop therapy for him in February 2016. • Gayan’s Testoviron injection started at 50 ml in April 2013; it increased to 125 ml in August 2016; it again increased to 250 ml in October 2017. Gayan visited the clinic at Karapitiya on February 8th to get the Testoviron injection. • Gayan was treated by Dr. Muditha Weerakkody, a consultant endocrinologist, who increased Gayan’s injection as well as thyroxine dosage from 100 to 150 mg per day. Other medication is continuing as well. • Gayan has to visit the clinic at Karapitiya after 3 months, but he has to receive the Testoviron injection every month. • Gayan is currently working at a tailoring shop as a helper.

MARCH 2018 • For the month of March, Gayan did not receive any vials of growth hormone (GH). After observing the progress of Gayan’s height, Professor Sujeewa had instructed to stop therapy for him in February 2016. • Gayan’s Testoviron injection started at 50 ml in April 2013; it increased to 125 ml in August 2016; it again increased to 250 ml in October 2017. Gayan visited the clinic at Karapitiya on March 8th to get the Testoviron injection. • Gayan was treated by Dr. Muditha Weerakkody, a consultant endocrinologist, who increased Gayan’s injection as well as thyroxine dosage from 100 to 150 mg per day. Other medication is continuing as well. • Gayan has to visit the clinic at Karapitiya after 3 months, but he has to receive the Testoviron injection every month. • Gayan is currently working at a tailoring shop as a helper.

Cost of 1 Vial Monthly Required Vials Monthly Cost of Food Parcel Expenditure for the Month Rs. 12,761/= -- Rs. 2,199/= Rs. 2,199/= + Travel Fee

Gayan’s Detailed Chart: JANUARY, FEBRUARY, and MARCH 2018 MONTH Date Obtained GH Height Weight Given Food and Travel Expenses JANUARY -- -- 163 cm 61 kg JANUARY 27, 2018 FEBRUARY -- -- 163 cm 61 kg FEBRUARY 24, 2018 MARCH -- -- 163 cm 61 kg MARCH 31, 2018 TOTAL 0 Vials

Patient 4: Tharindu Hasanga

JANUARY 2018

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• Tharindu met with the medical consultant at the Karapitiya Teaching Hospital in Galle on January 9th with his new blood profile. Due to the medical consultant treating him for a severe attack of viral influenza, and directing him to stop his medication, Tharindu’s cholesterol level was high. • Tharindu’s usual medication started again, with no change in the dosage. In February, he will need to visit the Karapitiya clinic again with a new blood profile. • Senior medical consultant, Dr. Arosha, had instructed Tharindu to do more exercises, such as cycling, to decrease his weight. Tharindu’s weight has decreased by several kilograms. The medical consultant had given Tharindu a diet system, and he must eat what is listed on the chart. • Professor Sujeewa Amarasinghe, the senior pediatrician at Karapitiya Teaching Hospital in Galle, Sri Lanka, had referred Tharindu to Dr. Arosha. • Tharindu takes Rosuvastatin (40 mg) and Ezetimibe (10 mg) each night. • Tharindu is 165.5 cm tall and weighs 79.5 kg. • He also receives a food parcel with more grains and a packet of fat-free milk powder. For his food parcel, we had also reduced the quantity of red rice and added soy protein as instructed by Dr. Arosha since August 2016.

FEBRUARY 2018 • Tharindu visited the Karapitiya Teaching Hospital in Galle on February 22nd with his new blood profile. • Tharindu’s cholesterol level was good, but his LDL cholesterol level was high. There was no change in his medication. • Senior medical consultant, Dr. Arosha, had instructed Tharindu to do more exercises, such as cycling, to decrease his weight. Tharindu’s weight has decreased by several kilograms. The medical consultant had given Tharindu a diet system, and he must eat what is listed on the chart. The medical consultant has instructed Tharindu to add the grain kurakkan to his diet. • Professor Sujeewa Amarasinghe, the senior pediatrician at Karapitiya Teaching Hospital in Galle, Sri Lanka, had referred Tharindu to Dr. Arosha. • Tharindu takes Rosuvastatin (40 mg) and Ezetimibe (10 mg) each night. • Tharindu is 165.5 cm tall and weighs 79.5 kg. • He also receives a food parcel with more grains and a packet of fat-free milk powder. For his food parcel, we also reduced the quantity of red rice and had added soy protein, as well as kurakkan, as instructed by Dr. Arosha.

MARCH 2018 • Tharindu last visited the Karapitiya Teaching Hospital in Galle on February 22nd with his new blood profile. • Tharindu’s cholesterol level was good, but his LDL cholesterol level was high. There was no change in his medication. Tharindu must visit the Karapitiya Teaching Hospital again after 6 months. • Senior medical consultant, Dr. Arosha, had instructed Tharindu to do more exercises, such as cycling, to decrease his weight. Tharindu’s weight has decreased by several kilograms. The medical consultant had given Tharindu a diet system, and he must eat what is listed on the chart. The medical consultant has instructed Tharindu to add the grain kurakkan to his diet. • Professor Sujeewa Amarasinghe, the senior pediatrician at Karapitiya Teaching Hospital in Galle, Sri Lanka, had referred Tharindu to Dr. Arosha. • Tharindu takes Rosuvastatin (40 mg) and Ezetimibe (10 mg) each night. • Tharindu is 165.5 cm tall and weighs 79.5 kg. • He also receives a food parcel with more grains and a packet of fat-free milk powder. For his food parcel, we also reduced the quantity of red rice and had added soy protein, as well as kurakkan, as instructed by Dr. Arosha.

Tharindu’s Detailed Chart: JANUARY, FEBRUARY, and MARCH 2018 Month Medicine Cost Given Food Parcel JANUARY 120 Rosuvastatin 10 mg Rs. 5,760/= JANUARY 27, 2018 30 Ezetimibe 10 mg Rs. 660/= FEBRUARY 120 Rosuvastatin 10 mg Rs. 5,760/= FEBRUARY 24, 2018 30 Ezetimibe 10 mg Rs. 660/= MARCH 120 Rosuvastatin 10 mg Rs. 5,760/= MARCH 31, 2018 30 Ezetimibe 10 mg Rs. 660/=

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12. Number served/number of direct project beneficiaries (for example, average number treated per day or month and if possible, per health condition).

The 4 children mentioned above

13. Number of indirect project beneficiaries (geographic coverage):

The parents and guardians of these 4 children in the Hambantota District and Matara District in the Southern Province of Sri Lanka

14. If applicable, please list the medical services provided:

Under the supervision of Professor Sujeewa, Senior Consultant of Pediatrics at the Karapitiya Teaching Hospital in Galle, Sri Lanka, with the assistance of the Medical Consultant of Ward No.1 and Registrar Keshani Gamlath of the Karapitiya Teaching Hospital, the following services are provided: ➢ Issuing medication ➢ Safely storing the delivered vials of growth hormone (GH) from Baurs Company ➢ Documenting the issued vials and recording the progress of the children’s height and weight by the medical authority at Karapitiya Teaching Hospital in Galle, Sri Lanka, under the Supervision of Professor Sujeewa, Senior Consultant Pediatrician of Karapitiya Teaching Hospital.

15. Please list the five most common health problems observed within your region: N/A

16. Notable project challenges and obstacles:

Monthly meetings with the participating children and their parents have minimized most of the challenges our program had experienced.

17. If applicable, plans for next reporting period:

Continue long-term medical support for these 4 children through monthly meetings, therapy, provision of food parcels, and any additionally required monitoring or treatment during the second quarter of 2018, which includes the months of April, May, and June.

18. If applicable, summary of RMF-sponsored medical supply distribution and use:

NAME Therapy Provided JANUARY FEBRUARY MARCH TOTAL MADURA MADUSHANKA Growth Hormone (GH) 4 4 4 12 MADUMEKALA UBEYWARNA ------GAYAN MADUSHANKA ------TOTAL 4 4 4 12 THARINDU HASANGA Rosuvastatin 10 mg 120 Tablets 120 Tablets 120 Tablets 360 Ezetimibe 10 mg 30 Tablets 30 Tablets 30 Tablets 90 TOTAL 150 150 150 450

19. Success story(s) highlighting project impact:

Height and Weight Progress of 4 Children in the Long-Term Medical Support Program: 2009 to 2018

Madumekala YEAR AGE HEIGHT WEIGHT 2009 15 years 122.5 cm 20.5 kg 2010 16 years 124 cm 21.6 kg 2011 17 years 124.5 cm 24.1 kg

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2012 18 years 126 cm 20.4 kg 2013 19 years 129.4 cm 21.9 kg 2014 20 years 135 cm 22 kg 2015 21 years 138 cm 25 kg 2016 22 years 142 cm 28 kg 2017 23 years 142.5 cm -- 2018 24 years -- --

Fazeer YEAR AGE HEIGHT WEIGHT 2009 14 years 133.5 cm 28 kg 2010 15 years 140.1 cm 35 kg 2011 16 years 143.7 cm 37.2 kg 2012 17 years 145.8 cm 43.1 kg 2013 18 years 147 cm 40 kg 2014 19 years 148 cm 48 kg 2015 20 years 149 cm 54 kg 2016 21 years -- -- 2017 22 years -- -- Note: Fazeer stopped participating in the program in 2016.

Gayan YEAR AGE HEIGHT WEIGHT 2009 13 years 138 cm 28 kg 2010 14 years 142.2 cm 24.5 kg 2011 15 years 145.6 cm 26.4 kg 2012 16 years 148.1 cm 34 kg 2013 17 years 152 cm 44.5 kg 2014 18 years 157 cm 51 kg 2015 19 years 159.9 cm 61.7 kg 2016 20 years 161 cm 59.5 kg 2017 21 years 163 cm 61 kg 2018 22 years -- --

Madura YEAR AGE HEIGHT WEIGHT 2009 13 years 120.6 cm 21 kg 2010 14 years 126.4 cm 22.8 kg 2011 15 years 132.5 cm 24.2 kg 2012 16 years 138 cm 28 kg 2013 17 years 144.7 cm 33 kg 2014 18 years 145 cm 33 kg 2015 19 years 146 cm 34.4 kg 2016 20 years 147.5 cm 38.5 kg 2017 21 years 148 cm 39.3 kg 2018 22 years -- --

Hyperlipidemia Treatment for 1 Child in the Long-Term Medical Support Program: 2009 to 2018

Tharindu YEAR AGE TREATMENT HEIGHT WEIGHT 2009 16 years 2010 17 years 2011 18 years Rosuvastatin 40 mg, nightly 2012 19 years Ezetimibe 10 mg, nightly 2013 20 years 2014 21 years

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2015 22 years 2016 23 years 2017 24 years 165.5 cm 79.5 kg 2018 25 years

20. Photos of project activities (file attachment is fine):

Monthly Meeting: January 2018

Project beneficiaries with Nishantha: Nishantha, Madura’s mother, Tharindu’s wife, and Madumekala

Madumekala signs the paperwork. Madumekala receives the travel fee from Nishantha.

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Minerva records Madumekala’s information. Gayan signs the paperwork.

Madura’s mother signs the paperwork. Madura’s mother receives the travel fee from Nishantha.

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Madura’s mother provides his information to Minerva. Tharindu’s wife signs the paperwork.

Tharindu’s wife provides his information to Minerva. Nishantha is hard at work.

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Minerva with the beneficiaries Madumekala receives the food parcel from Nishantha.

Madura’s mother receives the food parcel from Nishantha. Tharindu’s wife receives the food parcel from Nishantha.

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Madumekala with her food parcel Gayan with his food parcel

Madura’s mother with the food parcel Tharindu’s wife with the food parcel

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Monthly Meeting: February 2018

Minerva with the project beneficiaries: Minerva, Madura’s mother, Tharindu’s wife, Gayan, and Madumekala’s mother

Madumekala’s mother signs the paperwork. Madumekala’s mother receives the travel fee from Nishantha.

Madumekala’s mother provides her information to Minerva. Gayan signs the paperwork.

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Gayan receives the travel fee from Nishantha. Gayan gives his information to Minerva.

Madura’s mother signs the paperwork. Madura’s mother receives the travel fee from Nishantha.

Madura’s mother provides his information to Minerva. Tharindu’s wife receives the travel fee from Nishantha.

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Nishantha is very busy. Nishantha with the beneficiaries

Madumekala’s mother receives the food parcel from Nishantha. Gayan receives the food parcel from Nishantha.

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Madura’s mother receives the food parcel from Nishantha. Tharindu’s wife receives the food parcel from Nishantha.

Madumekala’s mother with the food parcel Gayan with his food parcel

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Madura’s mother with the food parcel Tharindu’s wife with the food parcel

Monthly Meeting: March 2018

Madumekala’s mother signs the paperwork. Madumekala’s mother gives her information to Minerva.

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Gayan signs the paperwork. Minerva records Gayan’s information.

Madura’s mother signs the paperwork. Gayan stands tall.

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Gayan receives his food parcel from Nishantha. Madura’s mother receives the food parcel from Nishantha.

Madumekala’s mother with the food parcel Gayan with his food parcel

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Madura’s mother with the food parcel Food items ready to be distributed to the beneficiaries

III. Financial Information 21. Detailed summary of expenditures within each budget category as presented in your funded proposal (file attachment is fine). Please note any changes from plans.

LONG-TERM MEDICAL SUPPORT, TOTAL EXPENDITURES FROM JANUARY TO MARCH 2018

Beneficiaries: 1 child receiving growth hormone therapy 1 child receiving treatment for hyperlipidemia

MONTH NAME THERAPY MEDICATION OBTAINED FOOD PARCELS TOTAL JANUARY Madumekala -- -- Rs. 6,597/= Rs. 6,597/= FEBRUARY Gayan -- -- Rs. 6,597/= Rs. 6,597/= MARCH Madura Growth Hormone (GH) 12 Vials: Rs. 180,000/= Rs. 6,597/= Rs. 186,597/= JANUARY Tharindu Hyperlipidemia Rs. 6,420/= Rs. 6,597/= Rs. 25,857/= FEBRUARY Rs. 6,420/= MARCH Rs. 6,420/= TOTAL Rs. 225,648/=

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