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My wife and I are good friends with another couple who has two kids (ages 4 and 1). Our kids are similar in age and best friends with theirs.

The one year old, after a long string of medical issues, including multiple surgeries, has just been diagnosed with 9P syndrome.

From what I've read, it's extremely rare and somewhat similar to Down syndrome.

I am deeply sad for them and am not sure how to process that BUT this question is about this amazing child and his parents. What can my wife and I do to help them today, next week, next month, next year, +10 years, etc.?

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You're already supporting them just by being a good friend, showing that you care about them today and far into the future. More people should have friends like you! –  Torben Gundtofte-Bruun Aug 12 '11 at 18:01
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5 Answers

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My seven year-old has cerebral palsy, so I've been on the other side of the coin. Mostly what I remember about those difficult first few months was that a lot of people started thinking they had to either make grand gestures or none at all. They planned special birthday parties for us in the hospital, just for us, but then didn't invite us to their "normal" birthday parties. They would offer to come over to clean our house or bring us dinner, but not just come to "hang out." It's not that the grand gestures are unwelcome. Far from it. It's just that you need the normal stuff too.

Another thing that can be very overwhelming is answering the same difficult questions about your child's condition over and over. A lot of parents deal with this by using social media of some sort to post the general updates. If your friends do this, try to respect it and not ask questions that are answered there. We know you mean well, and you personally may not have talked to us for a few days, but when we get several phone calls a day asking us to repeat the same information, it can get overwhelming. What is okay is saying something like, "I saw on twitter the surgery/therapy/whatever went well. That's great!" If they are up to elaborating, they will.

Another thing to avoid is treating the child like he is ultra fragile. There might be certain behaviors to avoid around him, which his parents will tell you about, but for the most part you can treat him like any other kid. Play with him, talk to him, hold him. With a 175 pound powered wheelchair and a two-year old temper in a seven year-old body, we're usually more concerned with our daughter accidentally hurting someone else than people accidentally hurting her.

Also keep in mind that your friends are grieving for the loss of the healthy child they were expecting. The emotions are not unlike grieving for the death of a loved one. Keep that in mind if your friends seem a little irrational. However, don't treat them like their child died. I know that's a subtle distinction, but you'd be surprised how many people still use their hushed "funeral voice" around us, and avoid making eye contact with our daughter. They still have a child they love very much and who in some ways will be difficult, but in other ways be more of a joy than they could have previously imagined.

Just the fact that you are asking this question tells me you will be fine. Don't be afraid to ask your friends how they would like you to handle certain situations. My advice above is fairly typical from talking with other parents, but everyone is different. I'm never offended by someone asking something like, "Would you like some visitors while you're in the hospital, or do you prefer some time alone together to recuperate?" By all means, don't let not being sure how to approach a situation drive you to indecision and inaction. It's always better to ask if you're not sure.

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Thank you @Karl, this is awesomely helpful. –  Michael Haren Aug 13 '11 at 2:16
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Just be there.

Share their pain. Don't run away. Love them and their children. This is a tragic situation, and they need people around them. They don't need to feel isolated, and people are going to shy away. Don't do so yourself.

With limited info at my disposal, the most obvious thing I can suggest for practical help is to offer to watch the other child whenever necessary, and to offer to watch the sick child when they need some time alone.

BTW .. don't forget about the other child. That one has got to be utterly bewildered, and probably feels neglected with all the fuss about the little one. Big bro/sis needs a lot of love and support. Provide it, even when the parents don't.

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Good advice, and thanks for remembering the 4yo –  Michael Haren Aug 12 '11 at 17:57
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Ask them; they know what they need or what isn't helpful.

Try and offer specific help. "Come over next week for a cup of tea" or "let's organise a playdate" (when that's appropriate).

Offer to go to support groups with them - although "Alfi's Syndrome" is quite rare, so there might not be any in your area.

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Thank you for your advice! –  Michael Haren Aug 12 '11 at 17:56
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Your friends are facing the process of grieving the loss of their "normal" child and their expectations of the future. Understanding the 5 stages of grief will prepare you to walk through this process with them and assist them on their path to acceptance.

Know that in the denial and isolation stage they may withdraw socially. Unrealistic anger at themselves, medical community or the world will likely follow. Their anger could even be directed at you because your children are healthy. Bargaining and depression follow. Acceptance is the final hurdle.

Your friends may pass through these stages quickly or get stuck in one place longer that another and can regress or be at more than one level at a time. As the years pass, there will be many opportunities to grieve again.

Your caring and accepting friendship can be an anchor in the storm that they now face. When confronted with great loss, I am often reminded to "cry when you want to and laugh when you can." I encourage you to follow this advice as you travel this journey with your friends.

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Thanks, @Marie! –  Michael Haren Aug 16 '11 at 0:50
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Besides the other answers of being a solid friend, you can also read up on what it is, only so that you know when your friends want to talk about it.

A quick Google search turned up several useful sources including a support group and a short WebMD page with more support addresses. Sadly, the Wikipedia entry is very brief.

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I am definitely into this, thanks for the references –  Michael Haren Aug 16 '11 at 0:51
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