Musings of a Marfan Mom

Danny Fundraising Update!

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I wanted to take a moment to update you on our efforts to fundraise for Danny and his mom Sarah. Thank you so much to everyone who has donated so far! As you may remember, our goal was to raise about $3500 in order to bring Danny & Sarah from the UK to the National Marfan Foundation conference in Chicago this summer. I am excited to announce that after Erin’s fundraiser, we have surpassed our initial fundraising goal!

However, we also learned that Danny is going to need heart surgery within the next few weeks. They will be away from home quite awhile with his surgery. Danny’s specialists are far away and as taking care of Danny’s complex medical needs is a full-time job, Sarah is unable to work. Although the UK covers the cost of the medical treatments themselves, Sarah still has to pay for their transportation, hotel accommodations for the doctor appointments, food while out of town at these appointments, and Danny’s special equipment for his visual, motor, and feeding delays. Therefore, Erin, our friend Jess, and I are going to continue with our other planned fundraisers to raise as much money for Sarah and Danny as possible. Jess’s fundraiser ends today I believe. My online auction is going to run April 16th – 23rd. We will keep Danny’s fundraising page open for direct donations as well.

I am still accepting donations of prizes for the online auction! We have some pretty awesome prizes confirmed so far, but I’d love to have some more! Over the next month I will have a blog post or two about the donors, highlighting their companies/blogs as applicable.

Thank you SO MUCH for your support. Sarah & Danny are very special to our Marfamily (Marfan family) and we’re grateful to all of you who are helping make their trip to the conference and help with medical travel/therapy expenses possible.

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  1. Thank you so much everyone for your kind donations, me and Danny are overwhelmed with the amazing support and generosity and so excited to be going to this life changing conference and thank you so much Maya for becoming a wonderful friend and an enormous support, I cannot wait to meet you “in real life” thank you, thnk you, thank you everyone xxx

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