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Take three -- hopefully I misspelled all of the words I needed to, to circumvent getting moderated again! LOL

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Quilting for a cause?
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I know a LOT of people do this.

Who do you ask for help? How did you first generate interest? Where do you publicize? How do you get STARTED? I am looking for advice!

Y'all know by now that I am pretty new to quilting. The very first quilt I made was for my nephew and g0dson, Samuel.

Samuel was diagnosed with Hypoplastic Left Heart Syndrome in the womb. He also had fluid issues -- hydrops fetalis.

From the first, we've been told again and again that his condition has a very low survival rate -- that he may not survive delivery, and if he does survive delivery he may not thrive for more than a handful of hours, and if he does thrive, the surgery required to repair his heart may not be an option for him.

Samuel entered this world ready to fight to earn his place in it. He went from the delivery room at Brigham and Womens to the CICU at Boston Children's (these two hospitals are connected with a long hallway). The cardiologist immediately performed an echocardiogram and determined that the surgery was viable, so off they went for the first step in the three-step process to make him better.

He spent the first several months of his life in the CICU at Boston Children's. It was almost a month before his parents were even able to hold him.

Samuel turned 2 this past September. He's had three open heart surgeries, and a plethora of other less major procedures. He isn't by any means out of the woods yet, but every day is another day and every day his chance of surviving the procedure to repair his heart grows.

There are a lot of different names for it: Faith. Positive thinking. Karma. The power of pray_er. The power of positive thinking. Any which way you call it, we as a family strongly believe that Sam has not fought this battle alone. The community we grew up in, the chu_rch my sister attends, the friends we've all known our entire lives -- all of these people have been pulling for Sam and giving him the love and support he needs to keep fighting, and to keep getting stronger. It has made such a monumental difference in our lives when it comes to holding onto hope.

When I started planning and creating Sam's quilt, I put every ounce of love and hope I have for this little boy into it. It came out crooked and lumpy and has tucks and bunches all over it, and I love it. It's perfect!

I spoke to my sister on the phone the other night. She was telling me about a trip in the elevator of the Cardiac unit at BCH when she was there for one of Sam's follow up appointments.

There was a gentleman in the elevator with her, and she just got a "vibe" from him that he was alone. She asked if he was visiting a friend, and he explained that his child was there, and had Left Heart Syndrome. My sister asked how old the child was, and the man said -- He was just born 15 minutes ago.

Imagine the odds - My sister is standing in this elevator, with her son Samuel. Samuel has the same condition this man's child has, and is right here smiling and laughing and giving this person hope. They talked a bit, my sister gave him the information about the Its My Heart foundation (more below), and encouraged him to call on her if they had any needs.

This story has been rolling around in my head for a couple days now. By the grace of G0d, Samuel and my sister were there when someone really needed them to be. My sister being who she is - such a compassionate and friendly and giving person - recognized a need and hopefully gave this family some hope for the future.

It's kind of emotional!

So today it occured to me. Why don't I try to help give people the hope, the love and the support that my sister received in abundance when she most needed it? I went to the store after work and bought a batch of heart-themed fabrics and will begin my first baby quilt tomorrow.

My sister first benefited from and is now the presi_dent of a charitable organization called It's My Heart - this is a national foundation, she is a part of the New England Chapter. This group provides non-medical support to families that are affected by CHD. They educate, promote awareness, and provide comfort care packages that include toiletries and sundries for people who may have found themselves entered into a long hospital stay they may or may not have been expecting. Who remembers to pack toothpaste when your children's lives are on the line?

I am going to start making quilts to go along with the care packages that are issued to families with newborns.

This message has been edited. Last edited by: NoraJ23,

So glad to see the post made it through. You are on the road to doing a great work! I wish you the very best and hope this act of love and kindness reaches many!

Nora, I will make a quilt..... for It's My Heart....

You're the best, Auntie! We can gab on it when I see you next week. We're on for Keepsake on Tues, yes?

What a wonderful thing you are doing for these beautiful babies. I just went to their website & see that they can use face masks for babies up to young adults who must wear a mask due to compromised immune systems. Maybe some of us who cannot make a quilt could make some masks. Thank you for making us aware of this.

Nora: my prayers are with your family and Samuel. aren't we lucky to have such great hospitals available to us? I also could make some quilts or blankets for the babies. Please keep in touch.

I am very jealous of your trip to Keepsake Quilters. My favorite place to take a ride to.

Nancy

Oh! If you are interested in this group and want to help in a different way, they would be THRILLED to have your support. Comfort care items are always in demand! If you can't do that, then positive thoughts are also a boon!

The group's website: http://www.itsmyheart.org/inde...le&id=141&Itemid=315 -- This leads to the New England Chapter, which turns 95% of their profit back into the care packages they make. I am not sure what the national percentage is.

The group's FB page: https://www.facebook.com/IMHBostonMa

And this is a link to an article that features my sister and nephew: http://www.wickedlocal.com/dan...-night#axzz1bLZjvtBZ -- The article was written just before his 3rd open heart surgery, which happened on November 12, 2012.

I've attached a picture of him here three weeks after that surgery - A friend of my sister's embroidered this shirt for him. It says, "Recovering from open heart surgery. Do not pick up under arms!"

This message has been edited. Last edited by: NoraJ23,

quote:

I am very jealous of your trip to Keepsake Quilters. My favorite place to take a ride to.

Nancy

Play hookey from work and come along!

Sounds like a great start your off to Nora,love and prayers for you and your sister and that gorgeous lil' darling Sam.

Are you a member of a quilt guild? They are always helpful and great for hands on teaching...as well as doing chairty work!

I am overwhelmed at the moment with projects, but may be able to contribute in the coming months.

quote:

Originally posted by Kentucky_Sunshine:
Are you a member of a quilt guild? They are always helpful and great for hands on teaching...as well as doing chairty work!

I am not! I know there are two in my local area, but they do not have good websites so there is minimal information about them. I have been keeping my ears open every time I go to the local shop, hoping to meet someone who is involved and can tell me how to get involved myself.

Nora - your post touched me deeply. 23 years ago this past Saturday, my younger son Semaj was born with that same heart defect. Back then they pushed for an end to the pregnancy since the survival rate was so low. Semaj had open heart surgery at 18 hours old and only lived 6 1/2 weeks. It was a tough 6 1/2 weeks emotionally, but well worth it. I wasn't aware of this organization but will look for one out here. Thanks for letting us know.

This message has been edited. Last edited by: headielamar,

Oh my goodness!

headielamar, I'm so sorry for you, and for your loss.

The procedure they are using for Samuel is only 15 years old - before then, his condition had a survival rate of less than 3% - but even with it, the survival rate is lower than 20%. The odds do increase after each successful surgery, and if Sam makes it to his 5th birthday, the doctors will consider him recovered from the procedure.

Even knowing that, since the procedure is so new there aren't any longterm statistics, so we have no idea what his adult life will be like. Time will tell, every day is a blessing.

One thing that we have all learned, that Samuel has taught us, is to find joy in every single moment. He is such a happy baby (as long as his mother is within reach). He is always smiling, laughing, learning, playing. His sister Emily is a year and a half older than him, and his biggest cheerleader. We've all learned not to take anything for granted, and to appreciate each other and every moment we all have together.

I just finished my first heart quilt. I'm very proud of it!

I'm going to spend some time this week thinking about the best way to make this pipe dream of mine a reality, and how people can help if they want to.

If anyone is interested in this project, feel free to shoot me a PM - I could use some sounding boards as I finalize plans!

~ Nora

Nora I will be proud to help. I will make a quilt to honor Sam and one to remember Semaj. It will be a few months before I get to it, I just had surgery and am not back in my sewing room yet.

Headielamar, I am so sorry for your heartache. I hope you don't mind if I think of one of my donations quilts as being Semajs quilt.

Nora, what size of quilt do you think would be best?

I did 40x40 -- 9 12 inch blocks and a 2 inch border.

That meant I didn't have to piece the backing, and it fits nicely in the canvas bags that my sister gives to CHD families.

I appreciate the help!

I will be working towards getting some info put together, maybe make a FB page explaining the cause to make it easier. I will post here again when I have that info sorted out.

<3 !

This message has been edited. Last edited by: NoraJ23,