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Day 5 of #30DaysofPH: My Son’s Struggle With PH and VSD in the Philippines
Marian Parame shares the story of her PH/heart warrior: her 4-year-old son, John Mark Gabriel, also lovingly called Maccoy, who was diagnosed at 1 week with ventricular septal defect or VSD, a hole in the heart that’s a type of congenital heart disease.
Following surgery, Marian and the rest of the family learned he had severe pulmonary arterial hypertension.
In the Philippines, educational and medical support is scarce, so Marian has to rely on online information on how to care for her son’s healthcare needs.
“It’s my ardent prayer that one day I will meet a specialist who can support us and educate us on PH/PAH.”
Marian, we hope your prayers are answered soon.
Now back to our PH Community: How is PAH care where you live?
To read the rest of Marian’s story and learn more about her and her son, click here.
Our #30DaysOfPH initiative is running for the entire month of November. Each day, we are featuring a different story, and a different view of life with PH. To read all of the stories, visit our website.
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19 Replies
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Is there no way to find a clinic or hospital outside the Philippines who will use zoom to help you? The whole world has spent a year and a half having zoom and remote appointments. Have you asked the doctors where your son is treated if they can help you find a location to consult with?
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@crisincincy I wish that were an option but I have the feeling, as @jenc mentioned, that it isn’t. The other big issue is cost. They are already struggling to pay for Maccoy’s PH medications so I’m not sure they could afford to seek help beyond the Philippines if it is available,
Marian is not a forum member but I am going to reach out to her and suggest that she join us.
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Wish we can????we try to ask 2nd opinion to Boston hospital we send his echo result but until now no reply ????
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Oh, my heartaches with Marian and her son, Maccoy. He was so close to having his VSD surgery again, and his pressures were too high. I’m praying that together with the Bosentan and sildenafil, before his 6 months are done with this order, he will have his VSD operation.
It seems he can be treated but needs this VSD surgery, and his pressures are too high when they go in to do the operation. May our prayers be answered for little Maccoy soon to have his surgery. Thank you for sharing your story.
@crisincincy, IKR that would make more sense. Many doctors in other countries will not work with anyone in the state and vice versa. There are many different rules that we have access to, and other places don’t, unfortunately. Hopefully, they will find someone, or our prayers will be answered for this young boy soon.
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Thank you for the prayers ma’am..I do hope we can sustain having his meds for 6mos????
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You are welcome, @marian1789. I’m so happy that you decided to join us. Please keep us updated on Maccoy and let us know how we can help you other than sending you positive thoughts and prayers.
Did you say above that Boston Children’s has now responded to your request to review his Echo?
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Thank you ma’am..yes ma’am I submitted 2d echk result to Boston to ask 2nd opinion but they haven’t replied anymore????
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Ma’am do you know someone that can help us buy meds?
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I’ll ask the admins. Is a Go Fund Me page an option for Marian re: her son’s meds (for starters, at least)? Would it be against Forum rules to announce the site and her son’s situation here?
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I take Ambrisentan for PAH. I have a yearly grant to help with the copay. Could someone with “authority” find out if any pharm company or copay assistance program is available to Marian for her sons meds? Surely all the pharm companies do some sort of business in the Philippines. I say AUTHORITY because it is so very easy to say no to just a person asking. But if there were an organization asking, there may be a more favorable response. Sorry to sound cynical, but…
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@brendad53 @crisincincy thank you for your desire to help @marian1789. My heart very much goes out to her and her son’s situation.
The “Go Fund Me” page is certainly an option for Marian to post on Facebook but it can’t be promoted on the forums. Advertising any kind of fundraiser on our forum would violate our no advertising policy.
Bionews is an online publisher and not a non-profit organization, but I have personally reached out to one and am waiting to hear if they might be able to help Marian. I will update when/if I hear back from them.
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Thanks ma’am Colleen Steele
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Thank you both, @brendad53 and @crisincincy, for your thoughtful suggestions for Marian and her son. As @colleensteele hares, unfortunately, we can’t promote that here in the PH news forums. I agree; FB would be more of a place for this. There are many PH groups on FB that you could also join, Marian.
@marian1789, my heart goes out to you and your family. I have two aunts from the Philippines and have also asked them for suggestions. I’ll let you know if they have ideas on who you can contact to help.
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Thanks maam
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Hi @marian1789, have you looked at this medical assistance program? They do help pay for medications for this in the Philippines. If you do not qualify for this, the social worker may suggest other nonprofits that may help.
Also, my aunt suggested checking with the office of the Filipino American President.
My heart and prayers are with you and your son.
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I process there ma’am they will give 3,000pesosbut mo payout yet they say they will just text me when payout is
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Hi @marian1789, I am happy that they can help you. Hopefully, you’ll get the payout soon. Also, check with your local government, etc.
Hugs and prayers are with you and Maccoy.
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- Praying they will do payout soon maam
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Sorry I am not really good in English Gofundme is not applicable in Philippines
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