Asking for help

18 months ago, I wrote about my brother’s niece Florence.

Florence is Thalia’s age. Her mom and my sister-in-law and I were all pregnant at the same time, comparing belly growth and whining about nausea. Florence was a perfectly normal, sweet, funny baby and then toddler – I still remember the first time my girls, and my brother’s two girls, and Florence and her sister all raced around the backyard together as we all cooed and ahhed at all that lovely estrogen, and imagined what they’d be like as teenagers, borrowing mascaras and comparing boyfriend stories and pretty much scaring the crap out of us.

And then Florence turned 20 months. She started to have tremors.

Later, she started limping. Then she started speaking less. Then she developed Celiac. Then tremors became blank stare seizures. Those became body drop seizures. She had to wear a helmet. A fucking helmet, people. A three year-old had to wear a helmet because they never knew if she was going to just fall down at any moment.

This August she stopped walking.

This September she stopped talking.

There is still no diagnosis. 

Today, 18 months later Florence has undergone blood plasma transfusions and transplants and seizure management and hospitals and more hospitals and more helmets and all kinds of stuff that you should pray you never ever ever have to deal with in your life. Ever.

Today, 18 months later, Florence is recovering from a bone marrow transplant she underwent yesterday. It’s essentially the nuclear option. And it’s a $25,000 procedure.

Friends and family have been supporting them with donations through the Children’s Organ Transplant Association. While this is not something I am normally comfortable doing, screw my comfort. I am putting the link here in case even one benevolent stranger out there wants to do the same. But the other thing that I ask for? Good thoughts, wishes, prayers, and a teeny sliver of your heart–for a little girl who did absolutely nothing to deserve any of this.


Update 5/4: If anything could serve to remind me that people, overall, are good, it is you. The comments, the Tweets, the generosity of heart and spirit…it is quite simply, overwhelming. And beyond what I could have imagined.

Florence’s grandma emailed me this morning to say thank you. And now allow me to say it too. Thank you from the bottom of my heart. May it come back to you in a million ways. 

If you want to keep up with Florence’s progress, you can follow the COTA blog here. 

{72 Comments}

72 thoughts on “Asking for help”

  1. You got it, Liz. The donation, and the wishes and the prayers. Please let me know if there is anything else I can do to help.

    Sending much love to you and Florence and your entire family.

  2. You have my admiration and respect, in asking for help for Florence. And you definitely have my thoughts and prayers. May the Creator ease her suffering–and even heal her–in a way that only the Creator can.

  3. Done.

    There is nothing as surreal and horrible as there being something wrong with your kid. I never imagined I'd know that first-hand, but now I do. I can't compare the seriousness of my daughter's issues to anyone else's, but it doesn't matter. When it's your own kid and it's anything worse than the stomach flu, it rips your heart out.

    I hope this transplant is the answer for her.

  4. Done. And retweeted. And mentioned in my blog. Was briefly there when my daughter was an infant, but was fortunate enough that she was eventually fine. I could not breathe when she was ill; each minute felt like an eternity. Thank you for giving us the privilege of helping, and for allowing us to fulfill our responsibility as decent human beings.

  5. We all inevitably need to ask for help and I am glad you did. I can't say I've experienced the sheer terror of a child's undiagnosed illness. But I can say that I would solicit the positive thoughts and donations as fast as a heartbeat if faced with this situation myself.

    I wish peace and hugs and blessings to your whole family.

  6. Dollar-wise, a mere fraction, but hoping for many, many more mere fractions that add up to everything Florence and her family need.

    Love and good thoughts – I've got heaps of those, and they're on their way too.

  7. Done.

    Thank you for sharing the opportunity to give. And in addition to a few dollars, I'm sending all manner of good wishes, vibes, hopes, and prayers to Florence and your entire family.

    My heart goes out to you all.

  8. I happy to help.

    I hope the transplant brings her better health!

    I'm sure you have already seen the story about the little Wisconsin boy with the rare disease? It won a Pulitzer this year. As a parent, I can barely imagine the heartbreak and worry of parents in this situation. As a scientist, I'm excited about the future potential of whole genome sequencing to help us figure out (and hopefully treat!) these rare and puzzling problems. But that future can't come soon enough for little kids like Florence.

  9. never feel strange asking for help via your blog. it's your platform to do whatever the f you want to do with it. you entertain me and you make me think, and yours is one of the few blogs i whole heartedly look forward to.
    as a reader, i pay it forward and donate. as a mom, i do it from the bottom of my heart and pray this sweet child heals.

  10. Liz, you are a good soul. My thoughts are with Florence, her family and yours. Has Florence been seen by professionals in naturopathic/holistic, nutrition and toxicology fields?. Take a look at http://www.earthclinic.com as some information is interesting and worth investigating. Good luck and well wishes.

  11. I'm a lurker, been reading forever and have never commented.

    I am 7 months pregnant with my first and am terrified of anything going wrong.

    Thank you for asking for help for Florence, it made me happy to donate and also spread the word to my family and friends to ask for their help as well.

  12. Thanks for sharing your story, there is nothing wrong with asking your blogging buddies for help. Sending extra prayers for your niece in that she begins to recover and that your family starts to get some much needed answers.

  13. I made a donation. Thanks for asking. I know you're not the type of person to ask for something like this regularly, so the fact that you did means it really really comes from the heart. May the bone marrow transplant and all the other treatment help Florence become the teenager and young women you imagined.

  14. Thank you for the opportunity to do something to help someone today, even though it was a small thing. Blessings to this darling girl and her family.

  15. Wow Fer. That whole family is lovely.

    And thank you all so so much. Not just for your generosity but for making me feel okay about the request. You are all amazing human beings.

  16. You should feel great about asking. That's what friends are for. Glad to be able to help a little; sending thoughts her way too.

  17. I sent you an email — this sounds familiar to me. Two girls in Nashville also were seemingly fine, then developed symptoms before the age of 3 which cause regression of abilities. I am so sorry — I hope this is not what Florence has. Thoughts and a contribution coming your way.

  18. Have they tested for Rett Syndrome? The symptoms sound slight similar to what my Friend's little girl is suffering from. Prayers and love for your family.

  19. So wish we had the cash. Alternatively, I am a member of the Marrow Donor Registry. Sign up is simple and you may save a life.
    Will pray for Florence.

  20. Dear Liz,
    I don't know you.. you don't know me.. but, with the wonderful world of Twitter I happened to click on your post about Florence. I am so sorry to hear what your family has been going through. I work as a RN in a large teaching hospital where many people and children come when they can't figure out what is going on and it can be SO frustrating when that diagnosis can not be made. Your family is in my thoughts and prayers. Please keep us updated… and I hope everyone who reads this story and is touched by it like me donates…. even just a little to help your family out! You are so right Liz, this little girl did not deserve this…. but, I do know that ill children have amazing strength and miracles do happen (that is coming from a very realistic…sometimes cynical.. ICU nurse)…..
    HUGS to you!

  21. I'm on my way to donate. Wow, this sort of thing breaks my heart! Funny how being a mom puts your heart on your sleeve even more than usual. Your all in my thoughts Liz!

  22. Thank you so much for posting a way to help this beautiful little girl and her brave family. My family will keep you and yours in our thoughts often. We know you'll grow up to be a strong and healthy girl and it will all be a memory. We'll donate as often as we can and post this as many places as we can. Blessings to you all.

  23. I know I'm only the frillionth person to say this, but asking for help for a child in need is the right thing to do and I'm glad that you did it.

    I'll be keeping that beautiful little girl in my thoughts today. She staked out a piece of my heart the day I read that first post.

  24. Liz, this is the best Mother's Day gift you could give us, the chance to help another woman's child. I'm honored to be asked and to give!
    Morra

  25. I am the gramma of a 3 y.o. boy who has been fighting stage 4 high risk cancer for almost 9 months. The fear and frustration is awful and I wish there was a magic wand to spare all children and parents from feeling it.

    We have been humbled and overwhelmed by the huge number of generous people who stepped forward to help with expenses. As noted by others, you did the right thing in asking as it gives others the opportunity to share. It is hard to be on the receiving end, but it is a gift to others when there is nothing else we can offer.

    Adding thoughts and a candle for Florence, sending strength and comfort to your family. Please keep us updated.

  26. I have featured you as my Blog of the Month selection for April (a lil behind schedule) in hopes of getting spreading the word about Florence and bringing in donations. I am sending my prayers, a donation and thoughts to your family.

    Adrian
    aka The Working Momaholic

  27. Been there; there's nothing worse. So sorry for your family. May Florence — and all our children — be safe and healthy. I donated too; every little bit helps. Good for you for helping them this way — what a wonderful use of a blog.

  28. Modern medicine is so incredible and so incredibly frustrating. I am shaking as I type this comment, counting my own lucky stars while feeling my heart break for Florence's mommy and daddy. Thanks for giving us the opportunity to help them. We are all part of the village, right?

  29. I'm glad you asked. I have said to myself a thousand and two times over the past almost-year that children should not get anything more than the occasional cold and a skinned knee. Everything else is just unfair and makes me angrier than I ever knew I could be. I can't cure my nephew's cancer any more than I can cure Florence, but donating made me feel a little better than just flipping off the universe like I'd been doing on bad days. Hoping that little bits from all of us go the long way that her family needs.

  30. It has been my joy, my pleasure, and my honor to follow Florence's journey since you first posted her information who knows how long ago. I've read every post and kept the family in my thoughts and prayers ever since. Florence (and her sister…and family for that matter) is/are beautiful people persevering through very difficult circumstances. Helping them is a joy because their honesty and hope has been a blessing. Thank you for introducing the family to me.

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