Yemariyam Tesega
Parent Name: Yalemwork Zegeye Child Name: Yemariyam Tesega Yemariyam is one year and five months ol…
TAPCCO: TESFA ADDIS PARENTS CHILDHOOD CANCER ORGANIZATION
To see children contracting pediatrics cancer get treatment and cure for the disease.
To improve the quality of life for children with cancer, support their families and assist pediatric cancer hematology/oncology facilities to be centers of excellence.
To increase the curability rate of pediatrics cancer through parents’ involvement and improving the quality of services in the treatment,diagnostic and follow – up works.
Tesfa Addis Parents Childhood Cancer Organization (TAPCCO) is a Non-profit Organization (NPO) established by parents of children with cancer and individuals interested in helping children with cancer and their families in December 5, 2012 under Charities and Societies proclamation No. 621/2009 Ethiopian Resident Charity License No. 2920 and re-registed under proclamation no. 1113/2019 on May 16, 2019.
TAPCCO seeks to support all children with cancer during treatment and throughout follow-up, their families in Tikur Anbessa General Specialized Hospital, St. Paul Millenium Hospital, Jimma University Hospital, Gondar University Hospital and Ayder Specialized Hospital and work closely to maintain and improve the facilities of the hospital. Activities include: organizing support groups and providing psychosocial support for children and parents or guardians; provide nutritional supplements, assist low income parents buy chemotherapy drugs as needed, provide lodging and transportation in Addis for parents from regions to follow-up treatment, and assist the pediatric hematology/oncology unit in the hospitals to upgrade services. The organization also is involved in awareness raising activities to educate the parents and the public about childhood cancer, early detection and how to improve the survival rate as cancer in children have a high rate of survival.
TAPCCO is mainly supported by The Aslan Project based in the USA an organization established as a result of an Ethiopian patient named Temesgen Gamachu, a 12 year old Ethiopian that had a chance to be treated in the USA. Temesgen though did not survive due to a spread of cancer in his body he was able to inspire Dr. Aziza Shad that initiated the Aslan project in his memory. The Aslan Project was founded by a group of doctors, nurses, and family members of children with cancer who believe passionately that no matter where they are born, all children deserve a chance at surviving cancer.
The other supporter is ACCO – American Childhood Cancer Organization that support us with nurtion at the outpatient center in Addis and salary of two staff. Other individuals both locally and internationally have been supporting TAPCCO to implement activities that help the children to get better treatment and clear from cancer. We have supporters like Ethiopian Insurance Company that helps us in medicine procrument when it is not available in the hospital pharmacy. Mulumul Bakery that has supplied us bread for more than seven years for the outpatient nurtition support. Moyee Coffee that supplies us with coffee for years for our group counselings in the hospital. ICL helping us with labratory investigation and covering one staff salary. Wuddassie Diagnostics and Pioneer Diagnostic Center for assisting our children with investigations like cityscan, MRI and related diagnostics.
One of the features of the treatment is it is a long term treatment. It takes minimum of three years as both an inpatients and out patients and for parents coming from regions, issues like food, accommodation and transportation is a great burden as a result many have abandoned the treatment. They went back to their home hoping for their kids to survive but many have died suffering, not even having palliative care.
The other problem parents and patients face is the problem of medicine shortage. Parents remember that cancer drugs in the past was not available and parents had to ask relatives and friends abroad or buy from outlets that are not even pharmacies to keep their children under treatment. Currently, cancer drugs are more available but still have issues of availability all year round. Many of the drugs are sold at subsidies rate but most parents with low income are found in a situation that they do not afford the medicines. In some cases the drugs are sold in private pharmacies at exorbitant price, for instance a medicine sold for 5 Birr are sold in private pharmacies for 600 Birr or more. This situation make parents with limited resource to loss hope and abandon the treatment endangering the lives of their kids.
Children on the other hand with the prolonged treatment, hospital life, staying away from home and seeing their parents’ helplessness get depressed. The depression compromises the healing process thus leading to life threatening situation.
Most parents also due to the lengthy treatment, lack of awareness and fear of the term cancer lose hope are reluctant to give the best care needed for their children. Low income parents especially coming from regions often don’t understand what it takes to treat cancer and the importance of their role in the treatment and care of their children. The issue of hygiene, nutrition and psychological wellbeing is a strange concept thus parents often struggle to think in this line and help their children to cure from their disease.
• TAPCCO has accommodation services for poor patients/parents coming from regions and nearby towns in three of its project area, Addis Ababa, Jimma and Gondar. The home gives service of accommodation, nurtition, hygiene facilities and supply as well as five meals a day for patients and three times a day for parents. The Homes give service to 900 patients and parents in a year time.
• TAPCCO gives transportation services five times a week from and back to the accommodation to Tikur Anbessa Hospital in order to protect children from infection and exposure and save them from the hassle of the city transport. In a year we serve around 500 patients and parents.
• TAPCCO has designed a counseling program with coffee ceremony at the ward and at the home twice a week for parents to share their concerns, learn about childhood cancer, nutrition, hygiene and other related issues. TAPCCO from its existence has give service upto 4,000 parents. It also give individual counseling to parents about the importance of following the treatment properly and not losing hope, or any issues that they want to talk.
• TAPCCO in order to give the patients and parents a break from hospital life, it has designed celebration of birthdays, holidays, play rooms and other events. This gives the children a lift in their psychological state and give them more resistance to fight the disease. u003cbru003eu003cbru003e• TAPCCO also tries to give support in purchase of medicines that are not easily accessed by the patients and parents.
• TAPCCO also provides clothing support for those in need as some parents come to treatment planning for a short period of time and in most cases stay for months. Thus, change of clothes becomes a problem. TAPCCO collects clothes from individuals and gives to the parents and children in order to help them keep clean.
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