Goodnight Keiki

After what has already felt like an impossible last week  with all of the happenings and the news in our Nation … it is with a heavy heart that I share with you that two more children battling Niemann Pick A have received there Angel wings. 

Lily Anna Beaupre, cherished daughter of Yvon Beaupre and Eliza Lozzo of Ottawa, lost her battle with NPD on Sunday, March 31st, 2013.  The family passed along this message to the Niemann Pick foundation to share:  “Our beautiful daughter Lily lost her battle to NPD on Easter Sunday. She left us in her sleep, the best possible way, with no suffering.”

lily

Riley Robbins, precious baby boy of Chris and Lori Robbins, lost his battle with NPA on Monday, April 22nd, 2013.  It is difficult to put into words the deep sadness and heartbreak due to the loss of a previous little one, Riley’s big sister Faith. Riley will be profoundly missed.

Riley

These families shared that you can leave messages for there families HERE.   There are no words for the sadness and heartbreak., they will be so deeply missed and we are so very sorry.   Treatment options can not come fast enough, we hope that in the very near future we will have options to provide HOPE for children battling NPA and there wonderful families.  Our love and prayers are with you all.   

I heard this song last night and I just found the words so beautiful and it of course made me thing of our sweestest little Wylder and all the children with Niemann Pick A.  “You are in my Veins”

 http://m.youtube.com/#/watch?v=ymJvCqECR44&desktop_uri=%2Fwatch%3Fv%3DymJvCqECR44

Many of you received your thank you cards from Phil for all your goodness and support as he ran the Boston Marathon in honor of Wylder James.  I wanted to share a little bit about that card with you.  I think it is such an important reminder that people care about our children and our families and they are wokring hard with our support to find treatment options.  Throughout the halls of Genzyme are patient partner paintings for children that battle different rare diseases that Genzyme is searching for answers to help with.  They are so beautiful and inspirational to walk by and a reminder to the folks working in the building that what they are working on and towards matter so very much to families like ours.  This particular FISH drawing was for a child with NPA.  ASmilingFish

The Smiling Fish

Artist, Angel WU, Taiwan
Condition Niemann Pick Disease
I am a fish, smiling with joy and happiness inward.
Although I have been loosing my health, I am still blessed
Because I am loved by my family and friends from church.
Their love not only colors my body, but also
Makes my world more beautiful.  I will always keep my
Smile as repayment for their love.

I just thought this was so beautiful, I wanted to share it with all of you.  Our love and prayers are with so many this week. Together, may we never loose hope.  xoxo

Comments

  1. beaitfully written by a beatiful family.
    Love this song, always a favorite!

    Eroca

  2. Tears running down my cheeks over here…the beautiful words that go with the fishy picture ring so true. Despite how horrible our little ones must have felt, they always somehow managed to smile. Wow! Missing all our little NPA angels.

  3. thank you so much for sharing about the sweet NPA babies, I wish this was not the reality. I hate freaking NPA. I am so glad for all the work you and STeven are doing to help find a cure. I know little Wylder is so proud. xoxo ,Chelsea

    • Mommy and Daddy says:

      I hate it to Chelsea, just hate everything about NPA. I feel fortunate that we are working on things too, but frustrated at the same time on how difficult it is. We can’t work fast or hard enough for these babies. xoxo

  4. Cathy Johnson says:

    Such a beautiful post, Shannon. I pray for the day when your post will be of joyous not sad news. Xoxoxo

  5. With you and Steven at the helm of the fight, human angel researchers persevering until treatment options and even a cure are found, and so many of us standing in rock solid support, it WILL happen. NPD is no match for those forces.

    • Thank you for the amazing compliment Leslie. We always feel your support and with wylder helping to guide us, we know there will be “hope always”. Sweet sweet little darlings. Xoxo

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