Pinoy Buzz: rare disease

'Courageous Caitie', girl with rare disease passes away

<div dir="ltr" style="text-align: left;" trbidi="on">MANILA, Philippines – “I will not bury my son! My son will bury me!” These are the most striking lines uttered by John Archibald portrayed by Denzel Washington in his “John Q” movie as he was fighting for his ailing son’s life.<br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_aOshSr_inNNuL0UBMJaAL680XpOyc2fOoecAsQLIZVEHNO28Do9qyQtfTo3Gq8ii6skTsRuh2V3ZFHbpnHDwentIOZ24qn2H7JlrV75DvMi-iJQTt2yM5qvqVnDnwZKMLTa9i00E8rjz/s1600/courageous-caitie.jpg" imageanchor="1" rel="nofollow" style="margin-left: 1em; margin-right: 1em;"><img alt="'Courageous Caitie' girl with rare disease passes away" border="0" height="390" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_aOshSr_inNNuL0UBMJaAL680XpOyc2fOoecAsQLIZVEHNO28Do9qyQtfTo3Gq8ii6skTsRuh2V3ZFHbpnHDwentIOZ24qn2H7JlrV75DvMi-iJQTt2yM5qvqVnDnwZKMLTa9i00E8rjz/s640/courageous-caitie.jpg" title="'Courageous Caitie' girl with rare disease passes away" width="560" /></a></div><br /><br />Our country had a real life John Q in the character of JayJay Lucas along with his wife Feliz who both joined their daughter’s journey and battle against a rare form of leukemia. Sadly, Caitie, the couple’s lovely angel passed away.<br /><br />It started late last year when Feliz recognized small insect bites in Caitie’s skin that eventually turned into bruises. Her parents had brought her into several skin specialists but all of them ruled her case as skin infections. <br /><br />Days gone by and the insect bites-turned bruises spread and got bigger. JayJay and Feliz were so worried and had decided to bring Little Caitie to well-known and arguably the best hospitals in the country to seek for further medical opinions. Caitie had been transferred from one hospital to another as the teams of doctors who were attending on her medical needs continued to dig in deep in search for the root cause of her ill condition. But even the best physicians in the archipelago had no clue and answer in the 3-year-old’s case.<br /><br />With almost couple of months of stay in the popular hospitals and with millions of pesos spent on bills and medicines, Mr. and Mrs. Lucas finally settled to fly their little miss to Singapore and hoping to see some light on their princess’ mystery disease.<br /><br />At last, with the use of better and more modern facilities in the hospital that they checked in, the Singaporean group of doctors had found what was wrong with Caitie. The little girl’s sickness is called juvenile myelomonocytic leukemia (JMML), a very rare form of leukemia where only one person out of a million acquires it. JMML commonly attacks infants and children.<br /><br />Upon knowing the diagnosis of Catie’s condition, friends of her family joined efforts to cheer them up and give encouragements especially to the adorable toddler. Thus, the moniker “Courageous Caitie” was born as a tribute to the Little Warrior’s unbelievable display of faith and hope despite of innumerable blood extractions, punctures, surgeries and tubes and wires attached all over her body.<br /><br />Even though seriously ill, Courageous Caitie defied all the troubles and pain. She even managed to play toys and paint in the hospital which delighted many Filipinos and foreigners.<br /><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcXN0LH67MVccSyiek_1JnufV475QKkjvUUyqpR4L4bm9RbtvvBIPe4biuDCAdlJbZ6XrsLVbcAiiSmSBDePP-BA7Vie5gYnZ3idIRFbLOf_SUXKwac3XV7ISg1O72DDIm9Lf1SKTAH8LY/s1600/courageous-caitie-paints.jpg" imageanchor="1" rel="nofollow" style="margin-left: auto; margin-right: auto;"><img alt="Courageous Catie enjoys painting with her brother." border="0" height="610" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcXN0LH67MVccSyiek_1JnufV475QKkjvUUyqpR4L4bm9RbtvvBIPe4biuDCAdlJbZ6XrsLVbcAiiSmSBDePP-BA7Vie5gYnZ3idIRFbLOf_SUXKwac3XV7ISg1O72DDIm9Lf1SKTAH8LY/s640/courageous-caitie-paints.jpg" title="Courageous Catie enjoys painting with her brother." width="560" /></a></td></tr><tr><td class="tr-caption">Courageous Catie enjoys painting with her brother. Courageous Caitie’s Facebook page</td></tr></tbody></table>Treating this rare type of leukemia is not an easy task to do and accomplish. There are plenty of tests and procedures that the patient must endure and aside from those things, money is really an issue. The friends of Caitie’s family initiated various kinds of fund raisers to support her mounting medical bills.<br /><br />But morning of March 31st, her condition became critical and her oxygen level depleted. By noon time, her parents posted on Facebook with the caption: “Today our daughter has gone to Jesus already.”<br /><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgquSN3oCf0jAMIF9zDqxeGlH5FoehayUUlNHzWuA9lkq66BDl1lZ7Jbeld0VbeG4uisaYpBXslyANJNZtH9hOQP2clyx-s39rpkaAbdB1xGJi31y5tXl9U82AGV792YB4au45yjslxWxnN/s1600/courageous-caitie-with-her-dad.jpg" imageanchor="1" rel="nofollow" style="margin-left: auto; margin-right: auto;"><img alt="The heartbreaking photo of Courageous Caitie and her Dad." border="0" height="610" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgquSN3oCf0jAMIF9zDqxeGlH5FoehayUUlNHzWuA9lkq66BDl1lZ7Jbeld0VbeG4uisaYpBXslyANJNZtH9hOQP2clyx-s39rpkaAbdB1xGJi31y5tXl9U82AGV792YB4au45yjslxWxnN/s640/courageous-caitie-with-her-dad.jpg" title="The heartbreaking photo of Courageous Caitie and her Dad." width="560" /></a></td></tr><tr><td class="tr-caption">The heartbreaking photo of Courageous Caitie and her Dad. Courageous Caitie’s Facebook page.</td></tr></tbody></table>It is undeniable that Courageous Caitie inspired and touched plenty of lives here in Philippines and abroad. Keep on fighting. Keep on believing. Keep on praying are the lessons that we have learned from our young hero. Prayers and words of encouragement overwhelmed Courageous Catie’s Facebook page which only means that she was loved and admired by everyone.<br /><br />Caitie’s body will be flown back to Philippines on Friday night for her funeral. Her wake will be at Arlington Memorial Chapel starting on Saturday and cremation will be on Sunday.<br /><br />On behalf of The Summit Express, our thoughts and prayers go to the Lucas family.<br /><br /><b>-Joey Boy Capos, The Summit Express</b></div>

'Courageous Caitie', girl with rare disease passes away

MANILA, Philippines – “I will not bury my son! My son will bury me!” These are the most striking lines uttered by John Archibald portrayed b...

Pangasinan 'rare disease sufferers,' other patients in PH to benefit on new health law

<div dir="ltr" style="text-align: left;" trbidi="on">MANILA, Philippines -  Two years ago, the alleged 'mysterious disease' in Pangasinan province went viral online. Authorities then clarified that patients are suffering from <a href="http://pinoybuzz.blogkorner.com/2014/02/doh-claims-flesh-eating-skin-disease-in-pangasinan-a-hoax.html" rel="nofollow">rare diseases leprosy and severe case of psoriasis</a> to dispute original report from ABS-CBN.<br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyCPEQ_XbK3p_gaoPDa930uwfaLGzJb4WbD-wOQG5Gx7wFHPn0J-UmKNJphuHZZDDAEUqQBrOg0jaCCGnaJ9RpMV-cvr0aByIUwlEwkGEUjmghlPXG-m_l1ghuCZ6f_Vl-f7t8guq-2FbD/s1600/pangasinan-rare-disease-sufferers.jpg" imageanchor="1" rel="nofollow" style="margin-left: 1em; margin-right: 1em;"><img alt="Pangasinan 'rare disease sufferers,' other patients in PH to benefit on new health law" border="0" height="270" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyCPEQ_XbK3p_gaoPDa930uwfaLGzJb4WbD-wOQG5Gx7wFHPn0J-UmKNJphuHZZDDAEUqQBrOg0jaCCGnaJ9RpMV-cvr0aByIUwlEwkGEUjmghlPXG-m_l1ghuCZ6f_Vl-f7t8guq-2FbD/s640/pangasinan-rare-disease-sufferers.jpg" title="Pangasinan 'rare disease sufferers,' other patients in PH to benefit on new health law" width="560" /></a></div><br /><br />Reporter Jasmin Romero described the two patients from Santa Barbara and Villasis as having “decaying” (naaagnas) skin due to a <a href="http://pinoybuzz.blogkorner.com/2014/02/mysterious-disease-in-pangasinan-coincides-with-sadhu-sundar-selvaraj-prophecy-bandila-video.html" rel="nofollow">“mysterious disease” (misteryosong sakit)</a>.<br /><br />The Department of Health (DOH) local official said that the case is called necrotizing fasciitis, a serious bacterial infection that spreads rapidly and destroys the body’s soft tissue.<br /><br />In 2014, the Dermatological Society North Luzon Chapter said it will help the 2 patients with severe skin disease given their status in l<br /><br />The incident became a wake up call for the government to push for the passage of a bill that will mandate the government to assist persons with rare disease by increasing their access to medical treatment and drugs.<br /><br />On Wednesday, March 9, Teofisto "TG" Guingona III, Senate chairman of the Committee on Health and Demography announced that <a href="http://pinoybuzz.blogkorner.com/2014/02/senator-pia-cayetano-backs-medical-care-for-persons-with-rare-disease.html" rel="nofollow">Sen. Pia Cayetano's the health bill</a>, which mandates PhilHealth to cover the treatment of rare diseases, has finally been signed into law.<br /><br />Republic Act 10747, otherwise known as the Rare Diseases Act of the Philippines, was signed by Pres. Benigno S. Aquino III early March. The new law seeks to "improve the access of patients diagnosed to have a rare disease, or patient highly suspected of having a rare disease, to comprehensive medical care and to timely health information to help them cope with their condition."<br /><br />Guingona co-sponsored the Rare Diseases Act legislated by Sen. Pia Cayetano, who serves as vice chair of Guingona's health committee. "To patients afflicted with rare diseases, the law ends the days of going through it alone," Guingona said. "It puts into place a permanent and sustainable mechanism by which government could care for the health of everyone with rare or orphan disorders."<br /><br />The Philippine Society of Orphan Disorders informs that, apart from those whose ailment is undetected or kept in secret, rare diseases afflict one out of 20,000 people. Children comprise as much as 75 percent of those with rare diseases.<br /><br />Guingona said that unlike patients with conventional ailments, those afflicted with rare diseases often need treatment and care for the rest of their lives. Accordingly, RA 10747stipulates that those suffering from a rare disease will be considered as Persons with Disabilities (PWDs) and shall enjoy the same benefits mandated by RA 7277, as amended, or the Magna Carta for Disabled Persons.<br /><br />In addition, the new law mandates that orphan drugs and products for the sole use of patients with rare diseases, as certified by the FDA will be exempted from all taxes and customs duties.<br /><br />"I thank the President and Sen. Pia Cayetano for giving the sick a fighting chance and once again demonstrating the administration's policy of inclusivity," said Guingona.</div>

Pangasinan 'rare disease sufferers,' other patients in PH to benefit on new health law

MANILA, Philippines - Two years ago, the alleged 'mysterious disease' in Pangasinan province went viral online. Authorities then cl...