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Campaign launched for rare disease

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Sunday, June 01, 2008

His determination and will to survive gave parents Pedro and Samantha Rafael an unanticipated seven and a half months to share with their son, time they were not sure they would have.

They are now using their sons fighting example to raise awareness concerning the disease as well as raising money to donate to under-funded childrens units in hospitals around Portugal.

Benjamim was the Rafaels second son, brother to seven-year-old Alex and a much-wanted baby. The first signs of complications were detected during the 20-week scan, which showed a mal-formation of the heart, an extra digit and a cyst on the head.

A termination was offered, though specialists also suggested most of the problems could be surgically resolved. As the unborn baby was dearly sought, the Rafaels decided to let nature take its course despite many friends and family offering advice to the contrary.

It was through Samanthas own research that the Pallister-Hall syndrome was suggested. Despite not yet being fully confirmed (tests are currently being carried out in the USA), national doctors and specialists are 99.9 per cent sure that Benjamim was Portugals first case of the rare condition.

Born by caesarean, Benjamim spent the first 24-hours of his life on a ventilator, though proved able to survive unassisted. A week later a rare and benign tumour was detected. In December, Benjamim was operated on to remove the growth, and was allowed to spend Christmas at home with his family.

Throughout the following months the infant recovered from heart surgery and fought aggressive illnesses including bronchitis, pneumonia, and septicaemia.

He finally gave up fighting on June 2nd, 2006, aged seven and a half months, five and a half of which had been spent in hospital.

Even though his battle was lost, Samantha and Pedro have nothing but praise and admiration for all hospitals and their staff involved in helped the family, not only for their medical expertise, but also for their human touch and emotional support during the treatments.

Braveheart is a nickname fondly and fittingly given to Benjamim, derived from his Scottish ancestry. It is also the name of the website and foundation created in his memory and which will hopefully improved the conditions of childrens units in hospitals around the country.

Samanthas ultimate goal is to purchase state-of-the-art ultrasound scanning equipment for babies conceived with rare and genetic diseases as well as for premature babies a goal that will require 55,000, and one that she is determined to reach.

Keenly involved in the mission is the So Loureno International School, who through charity-raising events collected 1,400 for Baby Bravehearts fund. Students, parents, teachers and staff organised cake-selling events, barbeques, quizzes and sponsored non-uniform days, which in total raised 1432,24.

A cheque was presented to Samantha Rafael during the schools end-of-term assembly, witnessed by other parents and all of the students and staff.

At an emotional ceremony, Carl Sheard, Samanthas stepfather and a teacher at So Loureno described his stepdaughter as An inspiration who even in her deepest depths of despair strove to find good in the situation and give hope to others.

Mr Sheard, a biology teacher, was responsible for introducing the school to Benjamins plight, a cause that both children and adults compassionately took to and made their own.

Accepting the cheque, Samantha broke down momentarily as she whispered, I always intended to bring Ben to see you, and said an enormous Thank You to all those who helped in the fundraising. The money raised is already being put good use, supporting the campaign for better paediatric facilities at Faro hospital.

New equipment has already been ordered and will be installed shortly.

A series of fund-raising events are planned for the duration of the year, and more information on events, donations, and the syndrome can be found on: www.babybraveheart.com.

The Rafael family would especially like to thank family & friends, So Loureno International school, CTT-CDP Albufeira, Jeropa Travel Agency, the Algarve Auctions, everyone else for their thoughts and donations, and all the hospitals involved for their dedication towards baby Benjamim.

Copyright © 2007 The Portugal News

Source: The Portugal News Online
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