Long-Term Medical Support and Growth HormoneTreatment for Children, Sri Lanka

Date: Prepared by: November 19, 2015 Stephney Minerva Fernando I. Demographic Information1.City & Province: Hambantota, Matara, and Badulla districts, Southern Province and Uva Province, Sri Lanka2. Organization: Real Medicine Foundation, Sri Lanka (www.realmedicinefoundation.org)3. Project Title: Long-Term Medical Support and Growth Hormone Treatment for Children4. Reporting Period: July 1, 2015 – September 30, 2015 5. Project Location (region & city/town/village):The cities of Tangalle, Embilipitiya, Bandarawela, and Matara and their villages of Seenimodera, Moraketiara,Welimada, Angunakolapelessa, and Kamburugamuwa; Hambantota District, Matara District, and Badulla District;Southern Province and Uva Province; Sri Lanka6. Target Population:

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

Name Province District Town Village1. Madumekala Ubeywarna Southern Province Hambantota Tangalle Seenimodera2. Gayan Madushanka Southern Province Hambantota Embilipitiya Angunakolapelessa3. Fazeer Ahamed Uva Province Badulla Bandarawela Welimada4. Madura Madushanka Southern Province Matara Matara Kamburugamuwa5. Tharindu Hasanga Southern Province Hambantota Tangalle Moraketiara

II. Project Information7. Project Goal:

Provide long-term medical support and treatment to children suffering from congenital health conditions affectinggrowth 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.

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29. 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 of July, August, and September 2015 Collected information from the children about their treatment and progress at the monthly meetings Provided traveling expenses and nutritious food packages for the children and their families Gave each of the 5 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 July, August, and September2015.

Month Date Time Venue DayJULY 64TH Meeting 7/25/2015

10:00 AMNo. 62 “Ben-Mina’’ Medaketiya, Tangalle, Sri Lanka

Last Saturday of every monthAUGUST 65TH Meeting 8/29/2015

SEPTEMBER 66TH Meeting 9/26/2015 Patient 1: Madumekala Ubeywarna

JULY 2015 Madumekala is a 21-year-old young woman. She came to the meeting with her father. She was given 4 vials

of growth hormone (GH) for the month of July. Madumekala is continuing sex hormone medication: Climen, 1 tablet daily. As Professor Sujeewa instructed, Madumekala’s growth hormone therapy was increased again from 12

clicks to 14 clicks. We plan to meet with Professor Sujeewa to get his decision about Madumekala continuingtherapy, as there has been little progress in her height for the last few months. Discussion with MadumekalaDr. Martina C. Fuchs requested that we have a small, private discussion with Madumekala regarding herfuture plans. We spoke with Madumekala and found that she has no plans. Unfortunately, she behaves like a4-year-old girl. She does not attend to any housework to help her mother. We had to put forward the samequestion many times about what she would do and what she would like to do as an adult, but Madumekalacould offer no specific answers. She seems to have no idea for her life, and depends on her mother foreverything.

AUGUST 2015 Madumekala is a 21-year-old young woman. She came to the meeting with her mother. She was given 2

vials of growth hormone for the month of August. Madumekala is continuing sex hormone medication: Climen, 1 tablet daily. As Professor Sujeewa instructed, Madumekala’s growth hormone therapy was increased again from 12

clicks to 14 clicks. We plan to meet with Professor Sujeewa to get his decision about Madumekala continuingthe therapy, as there has been little progress in her height for the last few months.

SEPTEMBER 2015 Madumekala is now 22 years old. She came to the meeting with her mother. She was given 4 vials of growth

hormone for the month of September. Madumekala is continuing sex hormone medication: Climen, 1 tablet daily. As Professor Sujeewa instructed, Madumekala’s growth hormone therapy was increased again from 12

clicks to 14 clicks. We plan to meet with Professor Sujeewa to get his decision about Madumekala continuingthe therapy, as there has been little progress in her height for the last few months.

Cost of 1 Vial Monthly Required Vials Monthly Cost of Food Parcel Expenditure for the Month Rs. 12,761/= 4 Rs. 2,199/= Rs. 53,243/= + Travel Fee

Madumekala’s Detailed Chart: JULY, AUGUST, and SEPTEMBER 2015

MONTH Date Obtained GH Height Weight Given Food & Travel Expenses

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JULY 7/16/20157/21/2015

2 Vials2 Vials

135.5 cm 25.2 kg JULY 25, 2015

AUGUST 8/27/2015 2 Vials 136 cm 24 kg AUGUST 29, 2015SEPTEMBER 9/13/2015

9/27/20152 Vials2 Vials

136 cm 24 kg SEPTEMBER 26, 2015

TOTAL 10 Vials

Patient 2: Fazeer Ahamed JULY 2015

Fazeer did not come to the July 2015 monthly meeting. Instead, his aunt attended the meeting on his behalfand received 4 vials of growth hormone (GH) therapy for him, for the month of July.

Fazeer’s dosage is 10 clicks at night, daily. He was also provided with a food parcel for the month of July,with no complaints.

Fazeer is now in grade 13, and he attends Wayamba Royal College in Kurunegala, where he lives whilecontinuing his studies. Economics, information technology, and accounting are the subjects he is studying inthe Advanced Level, and he will be sitting for the examination in the year 2016.

For the convenience of his studies, Mr. Nishantha Sandakelum and Mrs. Stephney Minerva Fernandodecided to allow Fazeer’s mother to attend the monthly meetings with all of Fazeer’s information. Thisdecision was made at the monthly meeting in January 2015, and Fazeer was very happy and thankful to us.

We instructed Fazeer to attend a meeting every 3 months.

AUGUST 2015 Neither Fazeer nor his family member attended the monthly meeting in August. Thus, Fazeer did not receive

his 4 vials of growth hormone therapy for the month of August. Fazeer’s dosage is 10 clicks at night, daily. Since neither he nor his family attended the monthly meeting,

Fazeer was not provided with a food parcel for the month of August. Fazeer is now in grade 13, and he attends Wayamba Royal College in Kurunegala, where he lives while

continuing his studies. Economics, information technology, and accounting are the subjects he is studying inthe Advanced Level, and he will be sitting for the examination in the year 2016.

For the convenience of his studies, Mr. Nishantha Sandakelum and Mrs. Stephney Minerva Fernandodecided to allow Fazeer’s mother to attend the monthly meetings with all of Fazeer’s information. Thisdecision was made at the monthly meeting in January 2015, and Fazeer was very happy and thankful to us.

We instructed Fazeer to attend a meeting every 3 months.

SEPTEMBER 2015 Fazeer attended the September 2015 meeting. He was given 4 vials of growth hormone therapy for the

month of September. Fazeer’s dosage is 10 clicks at night, daily. For the month of September, Fazeer was also provided with a

food parcel. Fazeer is now in grade 13, and he attends Wayamba Royal College in Kurunegala, where he lives while

continuing his studies. Economics, information technology, and accounting are the subjects he is studying inthe Advanced Level, and he will be sitting for the examination in the year 2016.

For the convenience of his studies, Mr. Nishantha Sandakelum and Mrs. Stephney Minerva Fernandodecided to allow Fazeer’s mother to attend the monthly meetings with all of Fazeer’s information. Thisdecision was made at the monthly meeting in January 2015, and Fazeer was very happy and thankful to us.

We instructed Fazeer to attend a meeting every 3 months.

Cost of 1 Vial Monthly Required Vials Monthly Cost of Food Parcel Expenditure for the Month Rs. 12,761/= 4 Vials Rs. 2,199/= Rs. 53,243/= + Travel Fee

Fazeer’s Detailed Chart: JULY, AUGUST, and SEPTEMBER 2015

MONTH Date Obtained GH Height Weight Given Food & Travel ExpensesJULY 7/29/2015 4 Vials 148 cm 52 kg JULY 25, 2015AUGUST -- --

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4SEPTEMBER 9/25/2015 4 Vials 148 cm 52 kg SEPTEMBER 26, 2015TOTAL 8 Vials

Patient 3: Madura Madushanka JULY 2015

Madura received 4 vials of growth hormone (GH) for the month of July. He had not checked his height duringthis time period. Madura came with his mother the week after the monthly meeting, at a time when he did nothave class. Madura will take his Advanced Level Examination in August 2015.

Madura had started to attend school and private classes. His mother is very much concerned with hisprogress, and the medical authorities at Karapitiya Teaching Hospital are very satisfied with his progress.

AUGUST 2015 Madura received 4 vials of growth hormone for the month of August. He had not checked his height during

this time period. Madura had started to attend school and private classes. His mother is very much concerned with his

progress, and the medical authorities at Karapitiya Teaching Hospital are very satisfied with her.

SEPTEMBER 2015 Madura received 4 vials of growth hormone for the month of September. He did check his height during this

time period. He had attended school and private classes, and completed the Advanced Level Exam. At the moment, he is

taking a computer course too. His mother is very much concerned with his progress, and the medicalauthorities at Karapitiya Teaching Hospital are very satisfied with her.

Cost of 1 Vial Monthly Required Vials Monthly Cost of Food Parcel Expenditure for the MonthRs. 12,761/= 4 Rs. 2,199/= Rs. 53,243/= + Travel Fee

Madura’s Detailed Chart: JULY, AUGUST, and SEPTEMBER 2015

MONTH Date Obtained GH Height Weight Given Food & Travel ExpensesJULY 7/17/2015

7/22/2015 2 Vials 2 Vials

145 cm 33 kg JULY 25, 2015

AUGUST 8/20/20158/27/2015

2 Vials 2 Vials

145 cm 33 kg AUGUST 29, 2015

SEPTEMBER 9/17/20159/23/2015

2 Vials 2 Vials

146 cm 34 kg SEPTEMBER 26, 2015

TOTAL 12 Vials

Patient 4: Gayan Madushanka JULY 2015

For the month of July, Gayan’s parents received 2 vials of growth hormone (GH) for him, and Gayan visitedthe clinic at Karapitiya once to check his progress.

Gayan’s dosage of growth hormone therapy is 10 clicks each night. An injection of Testoviron wasadministered on July 7th, 2015. No complaints, and his bone age is 15 years.

Gayan had started to attend school again, and he is very happy about the school. Gayan is adevelopmentally delayed child, and this school provides education for such children.

AUGUST 2015 For the month of August, Gayan’s parents received 4 vials of growth hormone for him, and Gayan visited the

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clinic at Karapitiya once to check his progress. Gayan’s dosage of growth hormone therapy is 10 clicks each night. An injection of Testoviron was

administered on August 4th, 2015. No complaints, and his bone age is 15 years. Gayan had started to attend school again, and he is very happy about the school. Gayan is a

developmentally delayed child, and this school provides education for such children.

SEPTEMBER 2015 For the month of September, Gayan’s parents received 4 vials of growth hormone for him, and Gayan visited

the clinic at Karapitiya once to check his progress. Gayan’s dosage of growth hormone therapy is 10 clicks each night. An injection of Testoviron was

administered on September 8th, 2015. No complaints, and his bone age is 15 years. Gayan had started to attend school again, and he is very happy about the school. Gayan is a

developmentally delayed child, and this school provides education for such children.

Cost of 1 Vial Required Vials for the Month Cost of the Food Parcel Expenditure for the MonthRs. 12,761/= 4 Rs. 2,199/= Rs. 53,243/= + Travel Fee

Gayan’s Detailed Chart: JULY, AUGUST, and SEPTEMBER 2015

Month Date Obtained GH Height Weight Given Food & TravelExpenses

JULY 7/7/2015 2 Vials 159.5 cm 59.1 kg JULY 25, 2015AUGUST 8/7/2015

8/28/2015 2 Vials 2 Vials

159.5 cm 60.8 kg AUGUST 29, 2015

SEPTEMBER 9/8/20159/25/2015

2 Vials 2 Vials

159.6 cm 61.6 kg SEPTEMBER 26, 2015

TOTAL 10 Vials

Patient 5: Tharindu Hasanga

JULY 2015 Tharindu’s increased medication had to continue. He visited the Karapitiya clinic with his new blood profile on

July 23rd, 2015. No change in his medication. Tharindu has to attend the clinic with his new blood profile after3 months.

Senior medical consultant, Dr. Arosha, had instructed Tharindu to do more exercises to decrease his weight.Tharindu’s weight is 75 kilos.

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. He also receives a food parcel withmore grains and a packet of fat-free milk powder. He is well now.

AUGUST 2015 Tharindu’s increased medication had to continue. He visited the Karapitiya clinic with his new blood profile on

July 23rd, 2015. No change in his medication. Tharindu has to attend the clinic with his new blood profile after 3 months.

Senior medical consultant, Dr. Arosha, had instructed Tharindu to do more exercises to decrease his weight. Tharindu’s weight is 75 kilos.

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. He also receives a food parcel with more grains and a packet of fat-free milk powder. He is well now.

SEPTEMBER 2015 Tharindu’s increased medication had to continue. He visited the Karapitiya clinic with his new blood profile on

July 23rd, 2015. No change in his medication. Tharindu has to visit the clinic again with his new blood profilenext month.

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6 Senior medical consultant, Dr. Arosha, had instructed Tharindu to do more exercises to decrease his weight.

Tharindu’s weight is 75 kilos. 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. He also receives a food parcel with

more grains and a packet of fat-free milk powder. He is well now.

Tharindu’s Detailed Chart: JULY, AUGUST, and SEPTEMBER 2015Month Medicine Cost Given Food ParcelJULY 120 Rosuvastatin 10 mg

30 Ezetimibe 10 mgRs. 5,760/=Rs. 660/=

JULY 25, 2015

AUGUST 120 Rosuvastatin 10 mg 30 Ezetimibe 10 mg

Rs. 5,760/=Rs. 660/=

AUGUST 29, 2015

SEPTEMBER 120 Rosuvastatin 10 mg 30 Ezetimibe 10 mg

Rs. 5,760/=Rs. 660/=

SEPTEMBER 26, 2015

TOTAL Rs. 19,260/=

12. Number served/number of direct project beneficiaries:

The 5 children mentioned above

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

The parents and guardians of these 5 children in the Hambantota District, Matara District, and Badulla District, inSouthern Province and Uva 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 inGalle, Sri Lanka, with the assistance of the Medical Consultant of Ward No.1 and Registrar Keshani Gamlath of theKarapitiya 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 medicalauthority 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 5 children and their parents have minimized most of the challenges ourprogram had experienced.

17. If applicable, plans for next reporting period:

Continue long-term medical support for these 5 children through monthly meetings, therapy, provision of foodparcels, and any additionally required monitoring or treatment during the fourth quarter of 2015, which includes themonths of October, November, and December.

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

Name Therapy Provided JULY AUGUST SEPTEMBER TOTALMADURA MADUSHANKA Growth Hormone (GH) 4 Vials

4 Vials 4 Vials12

MADUMEKAKLA UBEYWARNA Growth Hormone (GH)4 Vials 2 Vials 4 Vials

10

FAZEER AHAMED Growth Hormone (GH)4 Vials

--4 Vials

8

GAYAN MADUSHANKA Growth Hormone (GH)2 Vials 4 Vials 4 Vials

10

TOTAL 14 10 16 40THARINDU HASANGA Rosuvastatin 10 mg

Ezetimibe 10 mg 120 Tablets 30 Tablets

120 Tablets 30 Tablets

120 Tablets 30 Tablets

36090

TOTAL 150 150 150 450

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819. Success story(s) highlighting project impact:

Height and Weight Progress of 4 Children in the Long-Term Medical Support Program: 2009 to 2014

MadumekalaYEAR AGE HEIGHT WEIGHT2009 15 years 122.5 cm 20.5 kg 2010 16 years 124 cm 21.6 kg2011 17 years 124.5 cm 24.1 kg2012 18 years 126 cm 20.4 kg 2013 19 years 129.4 cm 21.9 kg2014 20 years 135 cm 22 kg

Fazeer

YEAR AGE HEIGHT WEIGHT2009 14 years 133.5 cm 28 kg2010 15 years 140.1 cm 35 kg2011 16 years 143.7 cm 37.2 kg2012 17 years 145.8 cm 43.1 kg2013 18 years 147 cm 40 kg2014 19 years 148 cm 48 kg

GayanYEAR AGE HEIGHT WEIGHT2009 13 years 138 cm 28 kg 2010 14 years 142.2 cm 24.5 kg2011 15 years 145.6 cm 26.4 kg2012 16 years 148.1 cm 34 kg 2013 17 years 152 cm 44.5 kg2014 18 years 157 cm 51 kg

MaduraYEAR AGE HEIGHT WEIGHT2009 13 years 120.6 cm 21 kg 2010 14 years 126.4 cm 22.8 kg2011 15 years 132.5 cm 24.2 kg2012 16 years 138 cm 28 kg 2013 17 years 144.7 cm 33 kg2014 18 years 145 cm 33 kg

Hyperlipidemia Treatment for 1 Child in the Long-Term Medical Support Program: 2009 to 2014

TharinduYEAR AGE TREATMENT2009 16 years

Rosuvastatin 40 mg, nightlyEzetimibe 10 mg, nightly

2010 17 years2011 18 years2012 19 years2013 20 years2014 21 years

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

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Monthly Meeting: July 2015

Project beneficiaries: Gayan, Madumekala, Madura's mother, and Fazeer's aunt

Madumekala receives the travel fee from Nishantha. Minerva records Madumekala’s information.

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Fazeer's aunt receives the travel fee from Nishantha. Fazeer’s aunt signs a document.

Minerva records Fazeer’s information. Gayan receives the travel fee from Nishantha.

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

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Minerva records Madura's information. Madura's mother receives the travel fee from Nishantha.

Minerva records Tharindu’s information. Gayan receives the food parcel from Nishantha.

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Madura's mother and Fazeer’s aunt receive food parcels.

Fazeer’s aunt with the food parcel Gayan with his food parcel

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Tharindu with his food parcel Bags full of healthy grains for the children

Monthly Meeting: August 2015

Project beneficiaries with Nishantha: Madura's mother, Madumekala, Gayan, Tharindu, and Nishantha

Gayan signs the document as his mother watches. Gayan and his mother provide his information to Minerva.

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Madura's mother receives the travel fee from Nishantha. Minerva records Madura's information.

Madumekala’s mother receives the travel fee from Nishantha. Minerva records Madumekala’s information.

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Minerva records Tharindu’s information. Tharindu receives his food parcel from Nishantha.

Tharindu with his food parcel Gayan with his food parcel

Madumekala with her food parcel Madumekala, soon to be 22 years old

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Madura's mother receives the food parcel from Nishantha. Madura's mother with the food parcel

Rice and grains for the children Items included in the food parcels

Monthly Meeting: September 2015

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Project beneficiaries with Minerva: Gayan, Madumekala, Fazeer, Madura, and Minerva

Fazeer signs the document. Minerva records Fazeer’s information.

Fazeer receives the travel fee from Nishantha. Gayan receives the travel fee from Nishantha.

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Gayan signs the document. Gayan and his mother provide his information to Minerva.

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

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Minerva records Madumekala’s information. Madura’s mother receives the travel fee from Nishantha.

Tharindu signs the document. Tharindu with his food parcel

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20Gayan receives the food parcel from Nishantha. Gayan with his food parcel

Madura receives the food parcel from Nishantha. Madura with his food parcel

Madumekala receives the food parcel from Nishantha. Madumekala with her food parcel

III. Financial Information21. 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 JULY TO SEPTEMBER 2015 Beneficiaries: 4 children receiving growth hormone therapy 1 child receiving treatment for hyperlipidemia

MONTHS NAMES THERAPY MEDICATION PROVIDED FOOD PARCELS TOTALJULYAUGUSTSEPTEMBER

Madumekala Growth Hormone (GH) 10 Vials: Rs. 127,610/= Rs. 6,597/= Rs. 134,207/=Gayan Growth Hormone (GH) 10 Vials: Rs. 127,610/= Rs. 6,597/= Rs. 134,207/=Madura Growth Hormone (GH) 12 Vials: Rs. 153,132/= Rs. 6,597/= Rs. 159,729/=Fazeer Growth Hormone (GH) 8 Vials: Rs. 102,088/= Rs. 6,597/= Rs. 108,685/=

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JULYAUGUSTSEPTEMBER

Tharindu Hyperlipidemia Rs. 6,420/= Rs. 6,420/= Rs. 6,420/=

Rs. 6,597/= Rs. 25,857/=

TOTAL Rs. 562,685/=

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