A Different Perspective
It's really hard raising a child with SDS in the United States where medicine is accessible, sometimes for a price but nevertheless, accessible. I just read about a family in Turkey whose baby was just diagnosed with Shwachman Diamond. She just joined the email support group I belong to. To hear her story is a little sobering and makes me extra grateful that I have access to some of the top doctors in the world and they are only 13 hours away from me, not on another continent!
Right now they live in Istanbula and was a miracle that the doctors there could even diagnose SDS but now they aren't sure how to treat her and they don't really have great resources. This family moves around alot for the husband's job. They just escaped out of Libya due to the war there but he is now being transferred to another third world country filled with disease- the Maldives. The doctors don't want them to take their baby because of the infection risks.
I can't even imagine what that would be like to live in a country that is so depressed and so full of disease when your children have little to no immune system. I like to think I will never complain about the medical care we receive at times but I know there will be times when the frustration will build but in the back of my mind, I will remember this little, young family in Turkey just trying to keep their little one safe.
Right now they live in Istanbula and was a miracle that the doctors there could even diagnose SDS but now they aren't sure how to treat her and they don't really have great resources. This family moves around alot for the husband's job. They just escaped out of Libya due to the war there but he is now being transferred to another third world country filled with disease- the Maldives. The doctors don't want them to take their baby because of the infection risks.
I can't even imagine what that would be like to live in a country that is so depressed and so full of disease when your children have little to no immune system. I like to think I will never complain about the medical care we receive at times but I know there will be times when the frustration will build but in the back of my mind, I will remember this little, young family in Turkey just trying to keep their little one safe.
Hi Kath, I have started to read your blog from the very first post and so far here I am. And what a surprise to find a post about my family! :) Maldives was a difficult experience with absolutely no resources. Finally we came back to our home town Istanbul 2 months ago leaving dad alone in Maldives. Hopefully he will finish his assignment in few months and we'll settle down in Istanbul where we feel safer with our daughter's health issues. Each day I trust more to our doctors here. At least I know they are doing their best for us. But as you said, at some point they can get stuck for lack of exp. with SDS. We are planning to go to Camp Sunshine this year, so we can have link with the experts and complete the missing part of our health team.. By the way, I love reading your blog and I admire the way you are mothering to 3 SDS children alone, your courage and your sincerity sharing your life and your experience with us. I see I have tons to learn from you. I wish the best for you and your beautiful children.
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