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Devastating Talk with Ramyar’s Family About What to Expect Now as They Grieve Forgone Surgery

September 2, 2009 by Jeremy · Leave a Comment 

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We just had what was easily one of the most difficult, devastating conversations of our time here to date. Naturally, now that the intensity of emotion surrounding the time-sensitive decision to send Ramyar to surgery or not has passed, his parents both feel a sense of regret and that nagging question, “Did we do the right thing? Maybe we should have risked the surgery…”

There was no easy way for this to play out. It was their decision to make – but we are all in full support of the decision they made. It was an impossible gamble.

For Ramyar’s part, he was just disappointed that one of PLC’s summer-interns-turned-short-term staff, Joshua, wasn’t around to play with when they visited.

This might be the last official update we give on Ramyar’s family – as there are thousands of kids like him still waiting – but this is not the last that we ourselves will spend time with them. Our hearts have been attached to theirs and we want to walk with them through this valley of the shadow of death.

Follow 4-year-old Ramyar on Twitter: @ramyarjafar. Subscribe to Ramyar’s updates via RSS here. Follow Ramyar’s thread of longer stories (with pictures) on the PLC blog here.

Jeremy Courtney lives and loves in Iraq as a co-founder and Executive Director of the Preemptive Love Coalition. He's also the father of two spectacular children, and married to the lovely Jessica Courtney. When not absorbed in PLC work he can be found writing songs and singing about hope and future. Follow Jeremy on Twitter: @JCourt.

Ramyar’s Family Decides to Forgo Surgery, Return to Iraq Tonight

August 30, 2009 by awara · 1 Comment 

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Yesterday was the very difficult day that we all hoped we would have to face with Ramyar and his family. We hoped when the medical signs showed Ramyar to be “operable” it would mean that there was a pretty clear cut way forward and that all parties would feel equally confident about embarking on that path of surgical therapy.

Instead, even though the medical signs said he was technically operable, everything else said that the surgery would be a serious fight for his life. In this case, “operable” did not mean “desirable.”

So we were left at a fork in the road with Ramyar and his family: should we press forward with what might be a surgical salvation, or should we play it safe, enjoy the next few years with Ramyar, and walk out with the full knowledge that forgoing this surgery will consign him to a deterioration in his quality of life over the next few years until he ultimately dies at age six or seven.

The most complicating factor had to do with the lack of unity among Ramyar’s family as to what should be done. Those of us closest to the decision in PLC were leaning toward not doing the surgery… as was the mother… but the father in Iraq was insisting that we all press forward.

In the end, at 8 p.m. Friday night Ramyar’s father and mother agree amongst themselves (without any input from PLC) that they wanted to forgo the surgery and enjoy these next years with Ramyar with some sort of certainty as to what they can expect.

From every perspective it was a sad day… except the perspective that sees Ramyar reunited with his father and grandparents in Iraq able to live out the next few years surrounded by people who love him.

This is the first close call like this we’ve ever had to make. Until today, every child has fit comfortably into the “operable” or “inoperable” category and parents have been confident in moving forward based on the information they had available to them.

NOTE: As an aside on financial transparency, the family’s $2,500 that they contributed to the overall cost of what would have been his surgery has covered all of the costs of their airfare, housing, food, and diagnostic testing for Ramyar. PLC has not expended any of our internationally fundraised dollars on this screening/selection process and all of the funds we had budgeted for Ramyar will be redirected to a child in the near future.

Follow 4-year-old Ramyar on Twitter: @ramyarjafar. Subscribe to Ramyar’s updates via RSS here. Follow Ramyar’s thread of longer stories (with pictures) on the PLC blog here.

Awara Hassan Mama is a Regional Development Officer for the Preemptive Love Coalition in charge of creating local solutions to local problems in Iraq among his compatriots and for the sake of our constituents. Awara often travels abroad with PLC children to surgery and serves as a translator and a key cooperator between communities in conflict.

A Fork in the Road for Ramyar: His Surgery Will Be Very Risky If We Proceed

August 28, 2009 by Jeremy · Leave a Comment 

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“Triage is the mantle of God.”

That’s what one guy reminded us when we struggled out loud with the difficulty of balancing our responsibility is to a single child – usually the one in front of us – against our responsibility to every other child out there waiting in line for life-saving heart surgery outside the country.

Today that mantle which should belong to God alone seems like it is thrust upon us once again.

It was questionable as to whether or not Ramyar would be “operable.” I guess we were hoping for a fairly black and white “go” or “no.” Instead, the medical experts have said that Ramyar is operable, but they’ve also said that it will be extremely dangerous – full of risks, extra expenses, and no guarantees – except, of course, that the post-operative course will be very long and slow.

We were hoping for a simple “go” or “no.”

We are talking with Ramyar’s family about the risks and what should be done. But the risks… and the expenses… it’s so hard to know what to do. It’s scary to think that the very surgery that was meant to bring life could more quickly bring about death. On the other hand, sitting by idly when a solution could be just on the other side of this risky ridge.

If you pray, please ask God to take His mantle back. To give some sort of insight as to what will be best for this child before us and the thousands like him waiting in line.

Follow 4-year-old Ramyar on Twitter: @ramyarjafar. Subscribe to Ramyar’s updates via RSS here. Follow Ramyar’s thread of longer stories (with pictures) on the PLC blog here.

Jeremy Courtney lives and loves in Iraq as a co-founder and Executive Director of the Preemptive Love Coalition. He's also the father of two spectacular children, and married to the lovely Jessica Courtney. When not absorbed in PLC work he can be found writing songs and singing about hope and future. Follow Jeremy on Twitter: @JCourt.

Meet Ramyar

August 25, 2009 by Joshua · Leave a Comment 

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Many thanks to Ashley, Angel, and Josh – former PLC Summer Interns turned short term staff – for doing all the initial work involved in preparing Ramyar for surgery so that he could end up on an airplane to Istanbul today (Thanks, Atlasjet!), at the beginning of the Muslim holy month of Ramadan, in hopes of receiving life-saving heart surgery from our partnership at Anadolu Medical Center (Anadolu Sağlık Merkezi).

Ramyar is borderline inoperable. He will require a diagnostic catheterization study to determine if he will be accept to surgery or if it is just far too risky. His four years of life to date have already made his situation worse than when he was born. Sometimes age has a way of healing these things… sometimes it has a way of exacerbating them to the point of inoperability.

So we all wait with great hopes and expectations that this precious three year old boy will be operable. Their family would value your prayers to that end.

Follow 4-year-old Ramyar on Twitter: @ramyarjafar. Subscribe to Ramyar’s updates via RSS here. Follow Ramyar’s thread of longer stories (with pictures) on the PLC blog here.

NOTE: In accordance with PLC’s desire to lend a hand-up by avoiding strict hand-outs (when possible), Ramyar’s family has paid $2,500 towards PLC’s highly-discounted diagnostic testing and surgery prices.

Joshua Gigliotti is a PLC Summer Intern ('09) turned short-term staff who spends a majority of his time with PLC taking exceptional photos of children in Iraq in an effort to humanize Iraqis and portray them as people full of dreams and hope. When his camera is not in-hand, Josh is often found in local tea houses with friends and also enjoys traversing the great outdoors. Follow Joshua on Twitter: @JoshGigs.

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