A Cause Close to My Heart

Because you guys are so amazing, I’d like to share something going on in my life. My nephew and his family are going through a tough time, and man, is THAT an understatement.

Macsen the Grayt - The blog of their journey

My sister-in-law, Alex, is currently pregnant with their third child, and first boy, Macsen. Fairly recently, we discovered that Macsen has been diagnosed with a rare form of CHD called Hypoplastic Left Heart Syndrome (HLHS), a disorder that I had previously never even heard of, let alone knew anything about.

This disorder means that Alex and her husband Aaron will have to come up with a crazy high amount of money to cover everything, including living expenses, car payments, etc. during and even after traveling to the city where they have the pediatric surgeons/facilities skilled in treating HLHS that they so desperately need.

From my sister-in-law Gabi, Alex’s sister: “All donated funds are going directly to the family to offset costs associated with Macsen’s Heart Journey. My sister has had to put her Photography Business on hold, due to the amount of time it takes to research, coordinate and select the best medical care in time for his birth. Your donations will help pay down some of the expected medical bills (after insurance), keep up with current financial commitments, and allow the family some time to recover properly without the financial burden hanging over their heads.

While the anticipated cost of his three surgeries is around $3 million, I set the goal for this campaign as his due date, 15-9-12, so, at $15,912.

If the worst scenario occurs, and he does not make it - (gulp) - every remaining penny donated here will go directly to support HLHS and CHD research. Every. Penny.”

Not only is donating to this cause just amazing, but YOU actually could get something back! {Aside from just feeling really awesome that you helped out people in need.}

I have donated TEN Portrait Mini-Sessions to the cause, and each one comes with a donation of only $75! And you can always gift those sessions to someone ELSE in need, like someone who would normally not be able to afford a professional portrait session. They’re completely free with the donation {some areas may incur travel fees, TBD}.

Even if you can’t contribute, pass the word! This is a very little-known-about disorder and it needs attention.

  • 22 June, 2012 - 5:51 am

    Stacey Lihn - In case Alex and Aaron haven't heart about http://www.sisters-by-heart.org, please let them know. We're a nonprofit supporting newly diagnosed HLHS families, nationwide. We'd love to send them a care package to get them started as they embark upon this new and frightening journey. My daughter, Zoe, is 25 months old, has undergone her first two open heart surgeries and is doing fantastic! Let them know, there is HOPE for Macsen! Heart hugs, Stacey ([email protected]).ReplyCancel

    • 23 June, 2012 - 4:55 am

      Aaron J. Miller - Yes, believe me Alex knows all about Zoe and Bodie… she's on the computer all day every day following all heart-babies and researching… got our SbH package last week and THANK YOU.ReplyCancel

  • 22 June, 2012 - 6:02 am

    Amy Gerrish Bennett - Yes, please send them to Sisters by Heart! We'd love to send them HOPE! My son, Bodie, is 28 months old, has undergone three surgeries (we say he got the 2 planned surgeries, plus a "bonus surgery" in-between. He had a very rough start, but, like Stacey's Zoe, is doing incredibly well now. There is so much HOPE for these kiddos now!

    Heart Hugs,
    AmyReplyCancel

  • 22 June, 2012 - 8:51 pm

    Margaret Martini Mattos - God Bless Every one who is willing to help us financially, physically and spiritually. I love you all for caring. I hope to hold my new great grandson in my arms!ReplyCancel

  • 23 June, 2012 - 4:53 am

    Aaron J. Miller - Raven, thank you. YouAreAwesome.com ;-)
    (WOW, just had serious deja vu… had a dream about a year ago that I wrote that comment but when I woke up I couldn't figure out what the website was I saw in my dream or whose computer I was using — a laptop I've bought since then. WEIRD This comment was obviously NOT in the dream.)ReplyCancel

  • 26 June, 2012 - 5:30 pm

    Paulyna Rivera Garwick - We will keep Macsen and all of your family in our thoughts and will send healing and positive vibes his way. You can make it, Baby Macsen!ReplyCancel

  • 6 July, 2012 - 7:53 pm

    Barbara W. Wade - WOW…First, I've been stalking your page and you are a tremendous photographer! Second, I'm not local to you - I live in south Alabama…within minutes of little Macsen and his family - who are some of my best friends. I wish I was close enough to you to get a session with the money going to this cause. Simply put, I adore your family. I am head over heels in love with all of them…even the little guy himself. I pray for them daily and I love that they have such great support all over…and what you are giving them is awesome. I know they feel the love.ReplyCancel

    • 8 July, 2012 - 5:05 pm

      Raven Shutley - Hey Barbara! Thank you so much for all your your kind words. I know Alex & Aaron appreciate having a wonderful friend like you. And as far as a session from the donation, let's discuss it! You can always gift the session, we could meet halfway, or we could arrange it next time we're in the area. We definitely have options. Thank you so much for your support in this cause and for YouAreRaven.com. :) ReplyCancel

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