Musings of a Marfan Mom

Fundraiser for Sarah & Danny

| 14 Comments

Today, I want to ask all of you for some help. Last spring, my friend Sarah guest posted her son Danny’s diagnosis story. Danny is a few months older than Baby J and is severely affected by Marfan syndrome. In fact, he will most likely be having heart surgery very soon.

Danny’s case of Marfan is so severe there aren’t many doctors experienced in how to treat him, though there are a few here in the United States (Danny & Sarah live in the UK). Every summer, the best Marfan syndrome doctors come together at the National Marfan Foundation conference to provide free exams and lead workshops on the latest advancements in the syndrome. My friend Erin and I want to bring Sarah and Danny to this summer’s conference in Chicago. He’d be able to get a free echocardiogram and eye exam, plus consults with all the specialists. Sarah would be able to take home valuable information to Danny’s physicians back in the UK, as well as connect in person with the women of other affected children whom she’s been corresponding with for the past year. This would be a life changing experience for them.

Of course, Erin and I can’t do this alone. Here are some ways that you can help:

1) Donate. We’ve set up a page on YouCaring.com to track donations. It also lays out the budget for Sarah & Danny’s trip. We have a goal of $3,497. Every dollar helps!
2) If you’re near Seattle, WA, consider attending the Chili Feed & Silent Auction that Erin is organizing at her church. Details are on Facebook.
3) I’m organizing an online auction for mid April. Please consider donating an item to be auctioned off, or let me know of companies you’ve worked with who might be willing to help.
4) Spread the word! Blog about this, share this on your Facebook pages, pin it, re-tweet it, email it, whatever.

And if you have ideas of other ways to find funding, please let me know. NMF scholarships are only for people within the USA. Sarah is looking into funding from UK groups. If for some reason Danny and Sarah are not able to attend conference (we don’t raise enough money or health issues arise), the money raised will go to helping cover Danny’s medical and therapy expenses.

THANK YOU for helping in any way that you can.

And again, you can donate to Danny here.

child with Marfan syndrome

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14 Comments

  1. What kind of auction items are you looking for? If you’re including hand-made items, I can do a canopy-style car seat cover and/or some flower hair clips for you (sorry, my skills are limited to baby and little girl stuff and I have no corporate connections). Email me and let me know, as I’ll be hitting up JoAnn’s as soon as tax returns are in. :)
    I hope you reach your goal and Danny gets the care he needs!

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    marfmom Reply:

    Yes, definitely including hand-made items! I’ll send you an email, thanks!

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  2. I’d be more than happy to donate $30 to JJD if it would be of any help at all!

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    marfmom Reply:

    I’ll send you an email, thanks!

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  3. Thanks for sharing this story. We have a pretty large Facebook group. I would be happy to get them involved as well. Please let me know how we can help.

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    marfmom Reply:

    Thank you, that would be fantastic! Would you mind sharing the link here and asking them to spread the word and if they feel moved to help in another way too that would be great as well? Thanks again! Also, I love your blog! :-)

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  4. I live in Seattle! Our church is all about volunteering at the Children’s Hospital, maybe I can spread the word and get people to go to the fund raiser!

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    marfmom Reply:

    I totally forgot that you guys are there! I’ll send you an invite via FB! Thanks!

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  5. When are you holding the auction? What types of items are you looking for? If it would like I would be willing to donate something from Tastefully Simple.

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    marfmom Reply:

    The auction will be held in mid-April and I think what I’ll do is hold it via Facebook: post a picture of each item and then people can leave their bids in the comments. I’m looking for any type of item; if you’d be willing to donate something from Tastefully Simple that would be fabulous. I’ll send you an email! Thank you!

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  6. I would be interested in donating handmade objects for the auction.

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    marfmom Reply:

    Thank you! I will send you an email soon!

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  7. I’m happy to donate something to the auction! I have a friend who makes fabulous photo frames http://www.actingbalanced.com/2012/02/review-beautiful-photo-frame-from-west.html and I’d be happy to donate one…

    [Reply]

    marfmom Reply:

    Thanks! I’ll send you an email soon!

    [Reply]

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