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Remembering Miranda…

February 21, 2012

February 29th is Rare Disease Day.

It is also the day Miranda would have been 5 months old.

Some of you may know but others may not, when Miranda did not respond to the known treatments for PPHN (Persistent Pulmonary Hypertension of the Newborn) and with the absence of any congenital anomalies they began to suspect that what she had was ACD (Alveolar Capillary Dysplasia). It is an extremely rare disease with only approximately 200 (yes, two HUNDRED) reported cases since the 1940s! It is so rare that there is so much unknown about it, it can not currently be diagnosed prenatally, it is only found when the lung tissue is biopsied. It is universally fatal, there is no cure or treatment at this time. It is thought that a lung transplant would offer hope, but no child with ACD has lived long enough to receive one, most children live less that one month.

We had 28 days.

We were blessed to have more that 24 hours.

Without the help of ECMO at Johns Hopkins we would have lost her before she was even a full day old.

While on ECMO the baby receives heparin to prevent clots that are prone to forming in the circuit. Because of the amount of heparin in her body the surgeons did not feel the potential result outweighed the risk to Miranda and did not recommend the biopsy, we also declined because the only thing a result of ACD would give us at that time was a reason to remove support and we weren’t ready for that yet (at the time it didn’t seem she was either). We were given another opportunity after she died for a biopsy and autopsy, but in my haste to get home I declined once again. My mind was no longer in the hospital, it was home with my other children and we needed to be there with them. There are parts of that decision that I wish I could take back, but I can’t and we must move forward.

So my point being, we do not have a confirmed diagnosis of ACD but all of her symptoms including the lack of anything abnormal during my pregnancy have striking similarities to many of the stories of the other precious babies lost to ACD. If you visit the ACD Association website you can read some of the other children’s stories.

Why am I supporting an organization that we don’t even have a diagnosis for?

I have hope that with more awareness and fundraising that more research will be done. I hope that someday parents won’t have to face the same impossible questions and decisions we did. It won’t be a matter of a biopsy, one more invasive and risky procedure, instead maybe with more research doctors will be able to determine a diagnosis by blood screen or a scope. Better yet, with more research maybe they will find a cure! Then the risk could also bring a glimmer of hope in the days the babies are here because there will be a treatment for them.

How can you help? What and I really getting at?

I’d love to help raise money towards the ACD fund that NORD uses to present grants for research. Gifts can be made through the website in Miranda’s name. Please be sure to designate your gift for Alveolar Capillary Dysplasia (ACD) in the research fund drop-down menu.

As a gift for your giving and as a way to say thank you I’d also love to give something away to one of you…

In January I joined a knit-along on Ravelry for a mystery shawl. Each week the designer sent out a clue that contained the next portion of the pattern and I knit not knowing what the pattern was called or what the final project would look like. This past weekend she released the final version of the pattern along with it’s name.

Diantha

It means “Heavenly Flower”. The minute I saw that I knew I would be giving this special shawl away. You see not only was the title perfect, but I knit this with yarn I dyed in a color I didn’t sell in my shop because it was unrepeatable.

It is a gift I want to share, just as I’ve shared my precious Miranda with you.

If you are able to make a donation of any size (every little bit counts), either through the NORD site or through the PayPal donate button here, please leave a comment here (even if you’ve never commented before!) and I will enter your name in the drawing for this shawl. I will draw a winner on February 29th and contact the winner for shipping information. (If the winner does not respond and provide an address to ship to within 48 hours I will draw a second name if and so on as necessary, so please watch your email box!)

If you are unable to make a donation you can still help me.

Please share this post however you can, post it on your Facebook wall, tweet the link on Twitter, Pin this post on Pinterest, email it to a friend.

The more people that know what ACD is the better. Let’s get doctors and scientists interested in preforming more research for it!

((While you’re here be sure to click on the button on the right margin as well, for each click Lundbeck is donating $1 to NORD for Rare Disease Day 2012.))

Thank you for helping us honor Miranda’s legacy.

Miranda Gloria Walters

September 29, 2011 – October 27, 2011

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48 Comments leave one →
  1. Shanna permalink
    February 21, 2012 5:25 PM

    Done. I don’t have a lot of money right now, but Miranda got the last $5 in my pp account. I’m happy for her to have it.

    I miss y’all.

  2. Erica Chick permalink
    February 21, 2012 6:31 PM

    You and Miranda have touched my life in such a positive powerful way!

  3. allyssa dehaan permalink
    February 21, 2012 6:46 PM

    Done. Happy 5 months Miranda

  4. February 21, 2012 8:37 PM

    Lisa I donated what I could, and it was mt pleasure to do so. I hope one day they will find a cure to help other families and they will never have to go through what you and your family had to. Bless you and your family.

  5. February 21, 2012 8:46 PM

    I came here from a link my friend Emily put on Facebook. My heart goes out to all of the families touched by ACD. *hug* I wish I could donate more, but I will share this link with as many as I can.

    • February 21, 2012 9:02 PM

      Thank you Jess. We all appreciate how much you all care about our babies. <3

  6. February 21, 2012 11:49 PM

    Just donated to NORD in memory of Miranda. This is such a special thing you are doing in her memory. :)

  7. Ekie O'Rielly permalink
    February 22, 2012 9:32 AM

    My heart goes out to you, My sister and her husband lost their precious little Zachary to this dreadful disease he was 18 days old and much like your Miranda, looked like your average healthy beautiful baby! We really need to raise awareness for this disease and get some research before too many families are inflicted with this nightmare.
    God Bless

  8. marion fraser permalink
    February 22, 2012 11:01 AM

    Best wishes to your family. Sorry to hear of your loss.

  9. MaryGrace permalink
    February 22, 2012 1:21 PM

    What can I say that I haven’t already said….I wish we could do more than just donate towards finding a cure for this disease but for now it will have to do. Love you bunches!

  10. February 22, 2012 3:01 PM

    ((hugs)) and love to you. I sent over some paypal. This is a fabulous idea. I’ve always wanted to do something for RDD and never have. Maybe I’ll get my butt in gear and do something since I do still have 6days ;)

  11. February 22, 2012 5:08 PM

    My heart goes out to you. I will be at the Hill on the 29th – and thinking of Miranda and so many others. Hugs.

  12. Cecelia permalink
    February 23, 2012 2:53 AM

    My heart just breaks for you. I cannot imagine.

    I couldn’t not contribute, and I hope this will bring more awareness and support for such a rare condition.

    Will think of you from now on.

  13. shanna permalink
    February 23, 2012 5:49 PM

    My mom wanted to donate, but doesn’t have a Paypal account, so I donated for her. :)

  14. Emmaline H permalink
    February 23, 2012 11:10 PM

    Kevin and I are honored to be able to remember Miranda with a donation. <3 Love, love.

  15. Heidi Riddle permalink
    February 24, 2012 7:41 PM

    <3 Much love from The Riddle circus to all of you <3

  16. Julie Waterbury permalink
    February 24, 2012 9:16 PM

    Confirmation that donation was complete, however making donation from afar, so let me know if there is a problem. Love you guys and think of you daily!

    • February 24, 2012 10:59 PM

      Thank you so much Julie, it came through. We appreciate your generosity. Our love to you and Stephen.

  17. Laurie permalink
    February 28, 2012 12:09 AM

    Love and Prayers to all of you always, from all of us. Missing your baby girl, my precious niece so much. Miss you all. Hugs and Kisses all around. xoxo

  18. Maria permalink
    February 29, 2012 10:16 AM

    Lots of love to you and your family Lisa, we donated what we could.

  19. Kim Anderson permalink
    February 29, 2012 10:43 AM

    What a beautiful tribute to your sweet Miranda! <3

    I donated today in her honor. Much love to you and your family
    Kim

    • February 29, 2012 12:10 PM

      Thank you Kim. <3 Honoring all our lost babies today!

  20. Christi Hannan permalink
    February 29, 2012 10:46 AM

    Thank You for sharing your story. I am Maria Menlove’s sister and as I sit her with my 2 beautiful grandbabies I think of our Lucy and your Angel in Heaven.

  21. jennifer williams permalink
    February 29, 2012 12:56 PM

    I made a donation today in honor of your sweet baby girl Miranda. What a great way to honor her. Knowing how painful it is to lose a baby and to a disease. May this money help people research and help them find answers. Love you!

  22. February 29, 2012 5:56 PM

    Such a touching and worthwhile post. I’m so sorry for your loss, but glad to have been informed about this rare disease. I hope that Joanne’s Letter Love class was as therapeutic for you as it has been for me.

    Hugs, Linda

    • February 29, 2012 11:26 PM

      Thanks Linda, Joanne’s class was such an unexpected and beautiful blessing. <3

  23. February 29, 2012 6:11 PM

    Your story is so incredibly touching. I made a small donation which I hope will help. My thoughts and prayers are with you and your family. I cannot even begin to imagine what you have been through and will continue to go through. Big hugs.

  24. Ashley R. permalink
    March 1, 2012 12:51 AM

    I just saw this now and sent a donation. You are in my thoughts and prayers Lisa. <3

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  1. Thank you so much… « Looking at Life CreativLEI
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