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The last 365: Saving Eliza

(Last Updated On: November 10, 2016)

If you only read one entry of mine – read this one. If you only share one entry – share this one. If you never come back to Heaven Not Harvard, but we find a way to make a miracle, then God used me today and that is enough. If you are a blogger at all, please read to the end for a special challenge.

With all the kids heading back to school, it has really hit home that this is it. This is my last year of being home with my daughter all day, everyday. Next year she will be heading off to school. Our home and church won’t be her whole world anymore. She will have teachers, friends, and experiences of which I am not a part. Daddy and I will still be her most important people for a while, but those days are numbered as well. We are already being replaced by a tiny pig in “temporary” residence.

1544503_10202334006971616_974680681935303742_nSomewhere on Facebook (I can’t remember where) I saw a post that said, essentially, “someday my child will leave home and take her memory of me.”

I felt like that spoke to my heart in such a profound way. I was immediately humbled, taking a moment to really consider what memories will she take? Am I really giving her my best attention and focus despite the medical challenges and physical limitations? Who will I be in her mind? In her childish, imperfect memory, will I have gotten more things right than wrong? Will I have made sure to treasure every story, backrub, lengthy ridiculous excuse about why she cannot possibly go to bed right now? Am I parenting with intentionality?

I resolved to really spend this year making all the memories I can, and this post just ignited the passion to make every second count. My last 365 with my baby girl at home, I was teary-eyed thinking about it.

And then I was challenged by a friend to do the #sing2lines challenge for #savingeliza. This little girl is a friend of a friend’s friend, making her more than just a face on the screen. I had donated when I first heard of this cause and shared the links on my Facebook page. I follow their gofundme page www.savingeliza.com and remember to pray for her, but I get busy. Her story gets lost in my daily busyness. When it gets brought back across my mind, I am struck all over again by the horror of her disease.

Because, she is more than just a faceless cause, in her place, I see my daughter who is just a few months younger than Eliza. I feel the crushing weight of knowing that her parents are counting down the number of days Eliza will able to sing, dance, talk, breathe; they will  be counting the days until they watch her have seizure after seizure, knowing eventually she will die and it will be both heartbreaking and an end to her pain.

Laying in bed, snuggled up to my Lil Bit this morning, I read her father’s words about Eliza’s disease and sobbed.sing2lines

Last July, our 4-year-old daughter Eliza was diagnosed with a rare terminal genetic disease called Sanfilippo Syndrome-Type A. In one terrifying instant, we were told that we would have to watch her fade away before our eyes.

Eliza and other children with this disease are missing an essential enzyme for normal cellular function. Over time, a toxic material called heparan sulfate builds up in their brain and body leading to severe disability and death before they even reach their teens.   This disease affects both genders, all races, all countries and continents.  It is everywhere and the world needs to know.


Eliza Today and Her Future

Right now Eliza is a fun loving 4-year-old who loves to sing, run and MOST of all, cuddle. She loves to play dress up and horse around with her rowdy big brother Beckham. She is, however, beginning to show signs of the disease in her learning and attention. And if nothing changes, it will only get worse from here.

By age 6, most children with her disease have irreversible brain damage and lose the ability to speak. As the disease continues to tear through her brain and body, she will lose the ability to walk and eventually she won’t even be able to feed herself as seizures ravage her body.

I watch the video and see a beautiful, creative 4-year-old girl who has until she is 5 before her brain and body will begin to show permanent damage from the ravages of this syndrome.

Her parents are literally counting down their last 365 days with their baby girl being able to walk and sing. She may live a few years longer, but in increasing pain. This is the stuff of nightmares, but it is their reality.

They have been ferocious in raising money. But they are short around $700,000 from my understanding. In Ohio, a potential gene-therapy experimental treatment is waiting to clear FDA hurdles and raise the final funds to make Eliza’s miracle happen.

Her parents are doing everything they can to save their baby. Including start their own Facebook challenge. Across my newsfeed, the #ALSicebucketchallenge is taking over, which is amazing. They’ve raised over $15 million since it began. Last year in the same time frame, they raised $1.8. Awesome! If we can get just get everyone who sees this message to share it on Facebook, Twitter, Reddit, or wherever – maybe we can reach $700,000. Seems like a modest goal compared to the $15 million doesn’t it?

Click on this link to see the origin of this challenge and news story about the family as of yesterday. Don’t miss seeing this little girl so full of wonderful preschooler energy.

http://www.rightthisminute.com/video/saving-eliza-launches-sing2lines-campaign

When I watched the video of her parents trying to decide if they should keep her baby toys in case she needs them again, I cried with them. When I listen to what will start to happen when she turns five, I shuddered. Wait – didn’t that say she is already 4 1/2?!? Her days are ticking down like the most hideous ‘Poe’esque clock, with a genetic sword swaying over her precious little golden head.

There are no words that accurately reflect how important raising awareness and funds are to me. We are donating as a family as we can, but our contribution feels like barely a drop in the bucket.

All I know is that the world will know were are Christians by our love, by our love – so I’m doing what little I can to love on this family.

I’ve posted her story and challenge all over Facebook, so much so FB started making me pass a human (captcha) test before posting. And I’m hoping, and I’m praying. So if you’ve read this far, I’m asking you to do three things 1)Donate! at www.savingeliza.com If everyone who read this post, donated a dollar, we’d have raised $15,000 so far. Please donate whatever you can. No amount is too small. 2)Do and share the #sing2lines challenge!!  3) share this post on your preferred social media – get this content to every inch of the globe!!!

If you’re a blogger or author, I’m issuing another challenge – reblog this. Share this post on your blog. I’ve only been doing this for a few months, so my following is small, but if you blog and your followers blog, we can keep this going long enough that Eliza never has to stop singing.

I hope you take a minute to donate, another to sing, and really do some soul searching today. How would you parent if you knew this was the last 365 days?

9 thoughts on “The last 365: Saving Eliza

  1. A 5 year old is so very young to be away from their primary caregiver and their home for most of the day. Homeschooling is not the right decision for every family, but I do believe that every family needs to thoughtfully consider when is the right time for their child to enter school, be it at age 5 or age 10 or never.

    1. Yes. Very true. If we decide to send her to school next year, I hope to be able to visit her classroom often.

  2. I have 3 nephews going through a similar situation. They have PKAN and the parents are requesting the FDA to allow them to receive a drug that patients in Europe are seeing some improvements. The drug is made here in the US but the FDA will not allow the use of humans. They have a petition that needs 100,000 signatures by middle of September. If any one can help spread the word on this as well that would be great. https://petitions.whitehouse.gov/petition/urge-fda-say-yes-accelerated-approval-re-024-treatment-pkan/62wtkjg9

    I donated to Eliza’s cause. Our family knows what her family is going through. I have shared her story and hope the funding will be complete soon. I will remember her and this awful disease in my prayers.

    If you would like to see the boys their facebook is………. https://www.facebook.com/kulsrudbrothers

    1. I already visited your site and signed the petition to encourage the FDA to approve the treatment.

  3. Dear Jennifer, I work with a holistic and natural product called SOUL. It may be helpful in keeping Eliza a bit more comfortable as her disease progresses. It is cheap enough to try and tasty enough that we see kids with it all the time. Visit soulkatie.com. The email isn’t linked yet but it will be in a few days. My testamony is a raised red blood cell count. But that is not what you are dealing with. I see a future granddaughter in her pictures. What have you got to gain? Lovingly, k

    1. She is the daughter of a friend of a friend. Thank you for the offer.

  4. I am so incredibly sad when I read posts like this. Our children are not meant to be sent off to government (or private) institutions, and your inner intuitions are screaming out because society is telling you to send your baby away for the majority of the day, the majority of the week, for 13 or more long years…and your Mother instinct KNOWS its wrong! Public education hasn’t been around more then 100 years, and the system is failing our children, and stealing them from their families. I had the same battle going on in my head when my eldest turned 5, and 2 weeks before Kindergarten I cancelled his registration and have been homeschooling him and his brothers for 5 years now. I realize more and more what was stolen from my own childhood by being sentenced to public school away from my home and family, and I am forever grateful I made the choice to raise and nurture and educate my own children the way God planned it to be. I wouldn’t give them up to traditional school for anything now, I would rather live poor and have my children with me. I see through the lies and revel in all the moments my kids were meant to spend at home with those who love them most. The terribly sad story at the end of this blog only further exempliefies how precious our time with our kids is, we never know how long we have them, and should some aweful tragedy ever happen to a child, and take them too soon, I cant imagine the sadness in all the additional time lost by sending them away to an institution day in and day out. Childhood is fleeting as it is, soak up all that is yours, dont give it away!

    1. I really respect your decision to keep your child home. It isn’t easy to homeschool. As a public school teacher for 17 years, I can honestly say that you will find some amazing teachers and coaches there. Deciding what is best, knowing your gifts and the challenges and gifts of your children is challenging. Each family has to make that decision thoughtfully and prayerfully.

  5. Reblogged this on I Am A Human Being Too and commented:
    “Last July, our 4-year-old daughter Eliza was diagnosed with a rare terminal genetic disease called Sanfilippo Syndrome-Type A. In one terrifying instant, we were told that we would have to watch her fade away before our eyes.

    Eliza and other children with this disease are missing an essential enzyme for normal cellular function. Over time, a toxic material called heparan sulfate builds up in their brain and body leading to severe disability and death before they even reach their teens. This disease affects both genders, all races, all countries and continents. It is everywhere and the world needs to know.

    Eliza Today and Her Future

    Right now Eliza is a fun loving 4-year-old who loves to sing, run and MOST of all, cuddle. She loves to play dress up and horse around with her rowdy big brother Beckham. She is, however, beginning to show signs of the disease in her learning and attention. And if nothing changes, it will only get worse from here.

    By age 6, most children with her disease have irreversible brain damage and lose the ability to speak. As the disease continues to tear through her brain and body, she will lose the ability to walk and eventually she won’t even be able to feed herself as seizures ravage her body.”

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