“Once a year is not enough”: Tiny Hearts holds annual camp for children with heart defects

Around 100 children and their parents will travel to Malé this week for the ‘Care for Tiny Hearts’ camp which seeks specialised treatment and detection for congenital heart defects.

An estimated 80% of these patients will have travelled long distances from the atolls for this rare opportunity for local treatment.

This is the sixth camp organised by local NGO Tiny Hearts of Maldives, running until March 26 at the Indira Gandhi Memorial Hospital.

Held just once a year, the event seeks to provide children registered with Tiny Hearts of Maldives the opportunity to consult pediatric cardiologists without travelling abroad.

“We have proved something is viable,” co-founder Ali Muaz told Minivan News. “Once a year is not enough, but it’s the most we can give.”

Tending to the patients over the course of the event is one local doctor, alongside two Indian doctors specialised in paediatric cardiology.

In addition to this, a special Fetal Echo workshop will also be conducted tomorrow for radiologists working in Malé. The purpose of this workshop is to assist in early detection and timely treatment of any defect present in the baby’s heart during pregnancy.

Tiny Hearts of Maldives was founded in 2009 by Ali Muaz and Fathimath Hishmath Faiz, in memory of their son Keyaan, who was born with a congenital heart condition and died at just 2 and a half months.

The experience of their son’s condition lead them to realise the critical need for access to information and assistance in dealing with specific health issues that affect newborns, infants, and young children in general, in the Maldives.

There are now 320 children registered with the organisation, with most coming from the sparsely scattered atolls outside the capital.

Unfortunately, there are only 1-2 cardiologists working all year round in the Maldives, according to Fiunaz Waheed of Tiny Hearts.

“It’s very difficult to get an appointment most of the time,” she added, “so they [parents] find it very difficult.”

When asked by Minivan News how the government could support a wider network of local treatment, Fuinaz preferred not to comment.

Muaz explained that around 80% of the patients who visited the camp came from atolls, with some travelling hours to attend. Regardimg the distribution of healthcare available to local islands he noted, “I’m hoping for it to get better,” though Muaz was also reluctant to comment on the ways in which the government could implement this.

One of the many issues faced by a centralised healthcare system is the lack of contact between doctors and patients, with Muaz explaining that the main method of contact is individual telephone calls and texts.

Another major problem is the long and costly journeys faced by families to reach specialist treatment – a well-documented problem for the country’s numerous citizens living with Thalassemia which requires regular visits to the capital, at great financial and physical cost to patients and their families.

The deficiencies in local healthcare often mean that families will look to travel abroad to get the essential treatment they need.

However, Fiunaz of Tiny Hearts explains that “sometimes its very difficult to send them abroad also, because its very costly.” She added that the Tiny Hearts camp is a rare opportunity for families to get the “proper treatment in the proper time”.

When asked about the possibility of expansion for Tiny Hearts, Muaz stated that they have signed an MoU with the ministry of education, and they hope to continue with their valuable work.

Minivan News was unable to gain a response from officials at the Ministry of Health at the time of press.

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Demand rising rapidly for child cardiac care in the Maldives: Tiny Hearts NGO

NGO Tiny Hearts of Maldives has claimed there is a strong increase in the number of families seeking consultations with child cardiac specialists volunteering at a healthcare camp it has been running annually since 2010.

During the second day of the Care for Tiny Hearts 2013 camp, which is set to conclude tomorrow (March 26), the NGO has claimed it will be hosting consultations and workshops with specialists from the Maldives and India to try and fill a gap in local healthcare concerning Congenital Heart Defects (CHD). Some 300 patients are currently said to be registered with Tiny Hearts.

Healthcare volunteers from India, a cardiac specialist from Indira Gandhi Memorial Hospital (IGMH) in Male’ and a local surgeon are said to be involved in this year’s program, which includes a workshop on trying to identify serious conditions at a foetal stage, according to local media.

A spokesperson for the charity today told Minivan News that a limited number of cardiac specialists practising in the Maldives had meant there remained a narrow opportunity for screening and supporting children at risk from CHD.

In addressing perceived challenges affecting its work, Tiny Hearts of Maldives claimed that it was experiencing difficulties common to many welfare and health groups across the country – namely in the limited resources available to Maldivians seeking specialist care.

As an example of these challenges, the spokesperson pointed to the importance of the Indian healthcare system in ensuring Maldivians were presently able to receive more specialist treatment in areas such as congenital illness.

However, the NGO spokesperson said that Tiny Heart’s biggest challenge remained in spreading awareness among the public about congenital disease of all kinds, as well as informing others on how and where they can seek support.

“Every individual can make a difference by spending a few minutes to share information with others on congenital illnesses,” the spokesperson added.

Tiny Hearts, which was formed back in 2009 to help local children suffering with CHD, has been at the centre of a number of high-profile awareness schemes and special fund-raisers in the Maldives in recent years.

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Superboys and supergirls at heart of charity focus ahead of Ramazan

It is a fairly uncommon site in Male’, if not anywhere else in the world.  A young Superman is sliding down the banisters of the capital’s national stadium, closely followed by a no-less fearless Snow White, several fairies and a princess, all while several marching bands provide a regimented soundtrack to the high-energy goings-on.

Rather than a colourful breakdown of order in Male’ amidst present political tensions, the event held in the capital yesterday represents attempts by a growing number of NGOs to provide fundraising and awareness programmes aimed at children in the run-up to the holy month of Ramazan that begins in August.

Local NGO Tiny Hearts of Maldives and the Advocating the Rights of Children (ARC) organisation have both this weekend launched initiatives designed to capitalise on the charitable spirit said to be at the heart of Ramazan.

Tiny Hearts race

Tiny Hearts, which was set up three years ago to help local youngsters suffering with Congenital Heart Defects (CHD), yesterday organised a fancy dress run attended by 400 pre-school children.  The event was supported by a number of organisations like the Diabetic Society of Maldives, Maldivian Red Crescent, the Scout Association of Maldives and the Maldives Girl Guide Association.

Five pre-schools participated in the race, including the Galolhu Madhrasa, Hulhumale Preschool, Maafannu Madharsa, Sheikh Abdul Rahman Preschool and Zaailing Preschool.

Music during the event was also provided by the brass bands of Iskandhar School, Jamaaludheen School and Imaadhudheen School.

According to the local charity, the ‘Race for Tiny Hearts 2012’ project was focused mainly on promoting physical activity in young Maldivians, whilst trying to encourage parents to do more at the family level to promote heart health.

Having previously been involved with high-profile attempts in the country to raise funds for its work, including an ultimately unsuccessful attempt to make the record books last year, CHD was not the sole focus of yesterday’s event for Tiny Hearts.

The charity nonetheless said that it had been able to raise awareness of both its own and other charitable organisations’ commitments and aims during the two hour event.

“We aimed and managed to engage various other institutions to work actively alongside charitable organisations to achieve goals that benefit society,” Tiny Hearts stated.

While yesterday’s series of races served as a fun family event for participants, Tiny Hearts has claimed that during the last three years, it has not only provided advice and awareness campaigns regarding CHD, but to also provide logistical and financial support in ensuring there is hope for child sufferers of heart defects.

The NGO estimates that 250 CHD patients have been able to fly abroad for specialist surgeries and healthcare, while the group has also worked to bring paediatric cardiologists to the Maldives for more direct assistance.

ARC Ramazan collection scheme

Yesterday also saw the ARC charity launch its 2012 Ramazan collection campaign designed to collect goods and other essentials for children of all ages that are raised in shelters.

A spokesperson for the charity today told Minivan News that the scheme, which had also been run back in 2011, was designed to aid the work of three key children’s shelters in the Maldives.   These shelters include; Kudakudhinge Hiya on Villingili, the Education and Training Centre for Children (ETCC) on Maafushi and Feydhoo Finolhu’s Correctional Training Centre for Children.

“Ramazan in the Maldives is a time where the majority of people went to help others and are in a giving mood. We have aimed this for now, as families will be buying lots of new things and we ask them to think of less fortunate children,” an ARC spokesperson said.

“We ran this project last year as well and found a lot of interest in people wanting to help, though not knowing how to. We looked at the needs of these shelters and have compiled a list. Collections opened yesterday (July 6) and will continue until next Saturday (July 14).”

The collections are taking place at the ARC office located on the second floor of M. Nooraaneeaage on Orchid Magu in Male’. Collection hours are between 2:00pm to 6:00pm from Saturday until Thursday. On friday, collection will occur between 4:00pm and 6:00pm local time.

According to the charity, the collection will take a large range of goods from clothing and apparel, to toiletries, toys, foods, books and stationery.

A full list of the goods needed can be read here.

Looking to its aim for the year ahead beyond Ramazan, a spokersperson for ARC said the organisation did not have a clear strategy regarding specific fund-raising events.

“We tend to work on a project-by-project basis, which has mainly seen us helping the shelters such as through capacity building initiatives and providing Parental Effectiveness Training (PET) projects for care-workers. It is important to support these care-workers as they are effectively parents to children as these shelters,” the spokesperson said.

ARC is presently involved in establishing a 
PET
 scheme amongst staff at the ETCC
 site in
 Maafushi.

The programme, which is being overseen by certified instructors has been devised by the charity in an attempt to give caregivers the means to better understand and deal with issues facing the children they look after. A similar PET programme was provided at Kudakudhinge
 Hiya in July 2011, the charity added.

Alongside focusing on national awareness projects relating to areas such as health and nutrition and child abuse, ARC claimed it also had a secondary function of providing sports programmes in fields such as badminton and chess to children living in the environment of a shelter.  The charity has also been involved in the provision of additional assistance and tutoring to assist underprivileged children with their school work and studies.

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