by Fareed Matthews
Brave Little Hearts SA (BLHSA) is a Congenital Heart Disease (CHD) Advocacy, Awareness and Family Support organisation established in December 2014, in honour of the Bravery and Courage of Thaakirah Matthews in her battle against CHD. During Thaakirah’s 4 year Heart Journey to mend her defective heart, she underwent four life-saving surgeries (two heart and two brain surgeries) at the Red Cross Children’s Hospital. In July 2013, after suffering a stroke, which resulted in paralysis and blindness, she had two brain surgeries (5 days apart). A year later in August 2014, she had a near 12 hour Open Heart Surgery to correct her four heart defects. Despite these adverse challenges, Thaakirah thrived against all odds and had a remarkable recovery. (Read her full story http://bit.ly/2wwlrjT )
BLHSA’s mission is to share hope through Thaakirah’s heart journey, to holistically empower and support families affected by congenital heart disease (CHD), developing and implementing patient centered care programs, peer-to-peer support services, education, creating public awareness, advocacy of CHD to policymakers for improved health services and participating in research studies of CHD.
The organisation functions on a voluntary basis with no funding. Its project goals since inception were achieved through networking relations and partnerships with entities that supports the BLHSA mission to Help Mend Broken Little Hearts, One Heart at a time.
These partnerships have earned some notable accomplishments both locally and internationally to raise awareness for CHD.
Locally the organisation:
- Introduced a support group at the cardiac ward at Red Cross Children’s Hospital for families of in-patients.
- Partnered in an inaugural information session between Cardiac medical doctors and their patients at the Red Cross Children’s Hospital aimed to forge relations focused on the patient-centered care system.
- Formed a Partnership with the UCT Children’s Heart Research Unit to research CHD in Africa on the PROTEA STUDY.
- Launched awareness campaigns at schools, sporting events and internationally in 14 cities in Europe, Africa and Asia with the help of networking partners.
- Internationally they:
- Assisted in affording free surgery for two heart patients from Kenya and Kurdistan respectively. http://bit.ly/2dkQtDj
- Represented South Africa for CHD Family Advocacy at the 1st International Congenital Heart Leadership Summit & 7th World Congress of Paediatric Cardiology and Cardiac Surgery in Barcelona in July 2017.
BLHSA works with hospitals and healthcare professionals to provide various outreach programs to support families when they need it the most. The support varies from weekly In-Hospital Peer Support groups that focuses on education and understanding of CHD, to provision of basic essential needs for families while at the hospital.
In addition to regular Hospital Visits, cost effective Social Media are used to reach out to parents during and after hospitalisation of their child to address any concerns they have regarding their child’s condition. With consent of parents, Heart stories and updates of their children are posted online when they are in surgery, recovery and post discharge.
Despite the challenges faced as a non-funded voluntary organisation, BLHSA continues to find innovative ways to Break the Silence on CHD.
Contact Details: firstname.lastname@example.org
Fareed Matthews (Heart Dad) 062 316 2656 (Parent Support – Fathers)