A Letter

Dear Sanfilippo Syndrome,

I’m taking the time to write this letter to you, because frankly, it’s time that I let you know how I really feel.

It’s been 5 years, 8 months and 11 days since we’ve found out about you.  That’s 2080 days we’ve known your name.  I’ve been quite content not to address you, but now it’s my turn to face you.

I’d like to know how it feels to know that you have stolen many of our dreams.  How does it feel to

know that you have slowly over time, robbed our daughter of every chance at a normal childhood.  How does it feel to know that you are a murderer?  Are you proud of the many tears that you have caused us to shed?  Is your plan to darken all of our days?  Do you laugh at the thought of the fear that you bring?  Do you exist to defeat?

When we were first told about you, you answered these questions for me.  In fact, it was clearly stated in that tri-fold brochure that we were handed just how ugly you were going to be.  That your life altering, quiet presence would tip-toe in our daughter’s body and ever so slowly start to show your ugly face.  In these 2080 days, you’ve taken her voice; that sweet voice that once said “I love you” to her mom and dad.  That voice that was able to call her baby sister by name.  “Ninley” she called her sister, Finley.  That voice that

loved to sing “Jesus loves me,” and “happy birthday.”  In 2080 days, your presence in her body has caused her to seize, caused her to have a feeding tube, and you are slowly taking her ability to walk and run.  I had dreams for our Livia Grace.  I dreamed of one day watching her walk down the aisle in my wedding gown.  Now, because of you, I have to think about cutting the threads of my beloved gown to make her funeral dress.

I have every reason to hate you.  To scream how horrible and unfair you are.  How I wish I never knew you.  It would be so easy for you to consume every ounce of every minute of every last breath I have.  I’m sure your plan was to defeat us.  I could use everything I had to curse your name.  To spend the rest of my life bitter, angry, and consumed with the thought of you.

But I won’t.

I don’t have time for you.

That evil, ugly plan that was laid out before us in that tri-fold; we aren’t allowing it to prevail over our family.

You see, your plan has back-fired.  Your presence, although un-welcome, has changed everything.  You’ve changed our hearts, our eyes, our priorities, and most of all our village of support.  Not only do we love more fiercely, appreciate more greatly, but we know the importance of taking care of one another.  You’ve brought people into our life that has decided to walk alongside us through this
journey.  A community of people that are inspired by an 8 year old girl; a child who has brought even the strongest men to drop to their knees and embrace her.

Sanfillipo Syndrome, unfortunately, you will always be a part of our world.  You will be included in our vocabulary, but you will not be included in how we love, how we LIV, and how we cherish every day.  You see, good really does prevail over evil.  Every part of you is evil, but every part of our daughter’s life is good.  Her inability to verbally speak into our hearts trumps the way her eyes look into our souls.  Her complete dependence on us as her parents to keep her fed, keep her clean, keep her safe has given us a new appreciation on how lucky we are to simply wash our own hands.  The ugliness you bring in the night when she fights to sleep only deepens our gratitude to wake with the opportunity of a new day.  The smiles and laughter that you are stealing make us celebrate as if we’ve won the lottery when a smile or laugh shows up.  Sanfilippo, you are life stealing, but you’ve given us a new life.  One in which we will never give up the hope that a miracle will save our baby girl, but one in which we LIV for the promise of heaven.

Eight

I vividly remember many details of this week 8 years ago. I loved being pregnant. I felt good through the entire 9 months. I loved every pregnancy moment with both of my girls. I was on my feet a lot when I was pregnant with Liv. I was a surgical tech at the time. (Loved that job!) Ironically, I was at work getting ready to scrub into a case. I received a phone call from the main OR (that's the ironic part). They called to tell me they had a time slot open on the 6th if I wanted to come in a day early for my c-section. I didn't even think twice and said, YES, of course! I immediately called Jake and shared the good news with him. He shared in my excitement that we were going to meet our baby girl a day earlier than expected.

The beauty of working in the OR and needing a c-section is that I was able to hand pick my OR staff for Livia's birthday. The surgeon, scrub-tech, CRNA, anesthesiologist, they were all my friends. People I worked with. People I trusted with my vulnerable body, and of course trusted to safely remove my first born. I remember just about every single day of being on the other side of the blue curtain. I of course, remember the nerves. However, the environment that was created that day was one of excitement and celebration. It was personal for everyone in that room, and they made me feel that way. They shared in my nerves, excitement, and anticipation for our girl. Of course, I remember Jake. When he was escorted into the OR, my friend Greg who was the CRNA, brought Jake to my

CRNA extraordinaire, Greg

head. He told Jake...."Just don't touch anything blue." I remember Jake's eyes over his mask. He was wide eyed, and focused on me. His hand on my shoulder and he whispered in my ear "We get to meet our baby girl. I love you so much." When the meds hit my system, I was overwhelmed with nausea. Greg, being the amazing guy he is, came in quickly to my rescue and simply put an alcohol wipe under my nose and told me to breath deep. I did, and it was instant relief. Greg, I still love you so much for that moment. I thought, how simple, how caring, and how out of the way he went to make me feel better. It wasn't long at all. A few tugs, a few familiar smells, and sounds. I knew exactly what they were doing on the other side of the curtain. I was so ready. I wanted her here. Jake was told to stand up to see her coming out. Greg had to kindly remind him not to jump into the sterile field. He was ready to pull Liv out himself. I heard the suction, I heard the cry. I heard my friend Renee say "she had so much dark hair!" Then the curtain dropped. This next moment is one that I pray I remember until my last. The very first moment I laid my eyes on my girl. She was so perfect. Her hands and feet were curled so tightly into her body. As if she were holding herself. Her lips were so full and so dark pink. Her hair was dark. Everyone celebrated her arrival in tears and smiles. I had no idea how in that room that day, not only was my daughter being born, but my heart was being born. My heart wasn't just being delivered, it was being transformed. Like a re birth of my heart through the birth of my daughter.

It's no secret that Livia's birthday has an undertone of sadness for me. How can it not? It's a "mask" moment for me. I go on with planning a party, inviting, cooking, baking, present buying, all while wearing a mask. Her birthday is a reminder that she has a death sentence, and time is not on her side. I do all these typical birthday things while wearing my mask. Shielding the feelings of fear, anger, sadness, and all the emotions that should NEVER be tied to a birthday. It's unfair, but I'll be damned if I'm going to let it steal my joy. You see, Sanfilippo Syndrome and I have it out.....a lot. And I always win. I'm no rookie at this birthday thing, so I've had time to prepare this year. In years past, I'd be in a brawl with SS and my thoughts would be...she's going to be 5, and then 6, and then 7. What's going to happen then??? This year, I'm embracing that she's 8 years old. She gets to be an 8 year old. I have an 8 year old!!!! And that's it. I want to celebrate her life and that she's here. I get to wake up to her tomorrow, hold her, sing happy birthday to her, and celebrate with those that love her the most in this life. She is more beautiful today than I could have ever hoped for. She is the most calm, laid back, pure little person that I've ever known. She has taught me more of how I should be as a human than any other person. How powerful is that, when she has no words to teach such things.

As far as my heart, I've learned that my heart is on loan to me. That's one big fat pill to swallow, but because of the opportunity that Jake and I have been given since that blue curtain has dropped has been a true experience of re birth. What we have taken so far is that if we are able to nurture that heart, fill it with as much love as humanly possible, share that heart with others, it will truly be ours forever. 

Happy 8th Birthday, my beautiful and perfect Livia Grace. May this 8th year of your life be the best one yet. I'm so thankful for you, every single day. You've grown me into my best. xoxo

Equipped

Since July 2014, this beauty has struggled with sleep. Slowly over time, her nights have gotten worse. Scary. We've tried strict bed time routines, melatonin, co-sleeping, weighted blankets, so on and so on. Nothing was helping.  We were helpless. We were sleep deprived.  She was a zombie, and we were going through the motions. We finally decided on doing another sleep study. I was convinced

she was having night time seizures. Her little body would thrash in her bed causing black eyes and scratches on her face. Even holding her through it, her body convulsed. She screamed and moaned throughout every. single. night.  Hearing these sounds come from her non verbal, barely laughing anymore self, was heart breaking. The sleep study came and went.  The results included sleep apnea, periodic limb movement syndrome, night terror syndrome, and possible frontal lobe epilepsy. 3 new medications introduced and life has changed dramatically. She's sleeping. Barely crying out. This change happened literally, overnight.
                                                                                                                                                                                                                             

                                    Those sleepless nights became a battle ground for me.

Fighting with myself to keep perspective.The dark has teeth, anyway. But then combine no sleep, fear for what was happening to my love, horrible thoughts that no parent should have, anger for not getting sleep, frustration, etc. etc. It was affecting every aspect of our life. It's a daily discipline to control my thoughts. I strive to keep it positive and focused. Control. I've given up on the idea of control. I'm certainly not in ultimate control. I often pray that God would guide my thoughts to His. I love the verse in Philippians. 4:8 "And now, dear brothers and sisters, one final thing. Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise." How beautiful and true is that? And, in a way, offers a little control back in our life. When I fix my mind on this, and pray this way, I can feel my thoughts drift away from the horrible scary, towards that which is most lovely. I'm not willing to waste my days on misery, negative contemplation, or fear. It's a daily battle; especially when Sanfilippo

shows it's life stealing, horrid, evil, ugly face.  I refuse to dwindle or let that evil win in this brief and precious time we have together. I choose most often, that which is pure and lovely.  I get to call her mine.  Livia and Finley are the pure lights in my life. Their little lives have taught me more than I have ever learned. Even in the midst of this terminal diagnosis with Livia, life has never felt more meaningful and fulfilling. I feel equipped with what I will need to survive this life. It's freeing and humbling. I still have a lot to learn, but embracing the pain and loving through it is how I know how to survive.

"God will never give you more than you can handle." I can't tell you how many times I've heard this. People say this with the best intentions, but I can't stand it. I respect it, but completely disagree with it. I don't believe this because if it were true, then no one would have trials. No one would grow. "Easy" has never been promised. What I believe is that we are equipped with everything we need to survive. To me, L O V E is the resounding theme. I've never felt more fully alive and in love than I do today. This journey that we are on has made me feel human.  I know that sounds funny, but before now, I felt as if I were skating through life, unscathed. Now, through trial and pain, moments are more brilliant. Time is more precious. Lives matter more. I'm not comparing who I am but rather embracing what I believe in and loving through it. Proverbs 24:32 "I applied my heart (my love) to what I observed and learned a lesson from what I saw." This lesson, this trial has fully equipped me with love, and that's all I need.

                           

Time

*2015*

A new year.

Fresh start, new resolutions, goals, organization, a new 12 month slapped on the wall (do people still do that?) Happy new year, and a Kumbya circle of "Auld Lang Syne."

I did my best to avoid all of it, until today.

I was quite content in 2014.  Jake and I celebrated 10 years.  The girls are at great ages.  I have the best of friends I've ever had my entire life.  Family is healthy (for the most part).  But there is no STOP button that I've found yet.  I could have planted myself in 2014 and been fine to stay right there.

A new year means another year gone.  That scares me, and feels completely unfair and out of control.  A new year means another birthday.  8 years old.  What will it bring?  I know, I know.....no one knows what the future holds.  I could be dead in 5 minutes.  But, our world, our every day passed is a clash between acute awareness of blessings and another day closer to Sanfilippo taking over our daughter.  It's a daily battle to get my head above the water to get a breath.  But I always do.  It's a daily battle to not look too far ahead and get consumed with.....what then?  But I do.  It's taken a lot of growth and a lot of soul searching to know that with God, anything....especially love can make even the hardest circumstances doable.  It's taken time.  It's taken years.

So, as I'm still not in the mood for that Kumbya circle, what I can appreciate is something I've learned from these years.  Through each hurdle or circumstance, I must allow the time that I need  through each event.  This journey has opened my eyes to many many things.  An important one that I realized in 2014 is rediscovering me.  What I'm capable of, what's important to me, and the most important is to stop comparing my life to anyone else's.  It's been so freeing.  Of course, I refused to make a new year's resolution, and honestly I'm not much into resolutions.  I feel like we should all strive to be our best throughout the 365, and not just on the 364th feel anew and only make it to day 10.  But that's my little ole opinion.  So this being day 6, it's definitely not a new year's resolution, but a renewed theme that I feel is our life.  It is this......To love fiercely and intently every single day.  To take care of one another as if our own lives depended on it.  To keep our eyes fixed on the eternal promise, pray, slow down and listen, and keep our Heavenly Father involved in all of it.

Happy New Year, my friends.  My heart is still burdened with the idea of another year gone, but I'm extremely grateful and hopeful for 2015.  I respect and look forward to the wisdom that comes along with "time." 

until next time......

love,

      Kelly

     

#tbt #fbf

#tbt Throw back Thursday

#fbf Flash back Friday

I don't know about you, but I love looking at "old" pictures.  I have a great stash of photo's that came from my grandma and grandpa Fish's house.  When my grandma passed away, and her house was being cleaned out, I grabbed as many as I was allowed.

Gma Fish, baby Kelly, Dad, Great Gma

Baby Audra, Kelly, Gpa Fish

The pictures are mostly of my dad.  Ranging from new born pics all the way through to when I was born.  There are a few of some other family members, and of course, my grandma and grandpa.

My grandma Freeman (my mom's mom) is an uninhibited picture taker.  Her home is full of pictures displayed as well as albums filled.  One of my favorite things to do when I'm at her house is to look through those albums.  Wherever she is, her camera is with her.  I think I get my impulsive urge to photo take from her.

Baby Kelly, Papa & Gma Freeman

George, Jake, Tim, Heidi, Patrick, Cindy

Pictures mean a lot to me.  I take numerous pictures every day.  Whether on my phone or on my rebel t2i.  I've become pretty obsessed with photography and am currently researching new lenses.  I'm no professional, but I love it.  I'm desperate to capture everything and to learn how to take the best pictures.

When it comes to #tbt and #fbf, I want to hide.  If you're not familiar with this social media trend, it's pretty easy to figure out.  People post a picture from the past and tag it #tbt or #fbf, depending on the day.  Now, I like to look at other people's posts, but to participate myself is extremely hard.

There is something about looking at pictures of loved ones that have passed.  For me, a sense of warmth mixed with longing mixed with man do I love these people comes over me.  I also start "wishing."  Wishing I would have said this or that.  Wishing I would have asked certain questions.  Longing for just one more moment with that person.

Gpa Hubert and Jake

 Happiness for the memories created and the life that once was.  Reminiscing is what these pictures present and what #tbt and #fbf represent.  However, for me, with Liv, the act of looking backwards is just a firm reminder of what has been lost, the changes that have occurred within her, and what her future holds.  It's so bittersweet to look back.  I avoid it at all costs, however, it's all around me.  And ultimately, it's ok.

My Fridge

    

Great Great Grandma and baby Kelly

 I find myself searching for her smile.  Her laugh.  They seem to be few and far between these days.  You know that book "Let me hold you longer" by Karen Kingsbury?  I love it so much, but "will I recognize your lasts?"  is a quote from that book that rings in my mind on a daily basis.  Will this day be the last smile or laugh?  Frankly, it's horrible.  But on the flip side, getting a smile or a laugh is like opening a Christmas present because I am so in tune to holding on to her before the cloud of MPS gets too dark.

So, I take a million and one pics, but rarely do I look back.  Video's, heck no.  Just today I had my camera out and have this 15 second video that I have locked on my memory card.  It's of Finley when she was 2 years old.  She's dressed in a pirate's costume and I have her say "Scurvy buccaneer" and "Shiver me timbers."  I showed it to her.  We sat and watched that video together for 5 minutes.  Playing it over and over again.  We laughed so hard and she asked me so many questions about it.  It was such a great 5 minutes.  I remember, as a kid, loving to watch home videos (on BETA, yes BETA video).  We have video of Liv before diagnosis, and I've never watched them.  But, I'm glad we have them.  Just like the million and one pictures I've taken and will take.  They are a security blanket for me.  Because one day, it's all I'll have of her.  These pictures will help me remember every.  single.  thing.

A #fbf of my baby girls

 

Pay it Forward

"Pay it forward."  This is a term that I'm sure we are all familiar with.  It originated with Lily Hardy Hammond in her 1916 book In the Garden of Delight.  She described this "deed" as "alternative giving,"  I love this because alternative means different, and giving means generosity.  I always thought of "pay it forward" as an on going movement.  Something we can all do because we've been motivated or inspired by someone else's generosity or kind act.  To pay it forward, in a sense, is to continue the act of showing love because of love.

No matter what situation or circumstance we are facing, we've all been equipped with the "tools" we need in order to survive.  Some days it may feel like the tool we need is buried deep within our junk drawers, but we know it's there.  Some days it feels like; if I have to pick up that tool one more time to fix ......, I'm going to flip my flip'n lid!  Some days it may feel like, THANK GOD I have this tool.  I'd be completely lost in this life without it.  Some days it may feel like; I'm standing in this tool aisle without one clue of which to choose.  Within each of us, our tool box exists.  For me; the way my day goes, my job performance, how I react to Jake or the girls, the way I treat my family and friends, my outlook, depends on my attitude towards my "tools." 

 I hear more often than not "I have no clue how you do what you do."  I hear it about the way I work out, the marathons I run, dealing with the situation with Livia, the foundation stuff, etc. etc.  But the same thing comes to mind every time I hear this.  I do it because I love it.  I could write an entire separate blog about why I run and workout, but I'll just keep it simple here.  It's therapy, and I like being healthy.  If exercise or endorphin's could be put in a pill, Walgreens wouldn't be able to keep it on the shelf.  It's not always easy, and some days my body is tired, but my "tool" with exercise is survival.  Exercise #1 makes me feel better.  Exercise helps me keep ahead of the physical demands I need with Liv.  Exercise also has created many many awesome relationships that I'm so thankful for.  I'd say everything else on my list, I equip myself with love.  I used to be hesitant about writing about love, or saying how getting through this journey is easier because of love.  But ya know what, it is.  These circumstances or situations we are facing are all lessons.  Having Liv and this journey we are facing with her has flipped this switch inside of me.  I reflect, a lot.  I think about growing up, family situations, personal decisions, wrong doings, great doings, and how I've been shaped through all of it.  The attitude we give towards whatever we are facing is going to determine the character, the strength, and the success in life.  In no way do I think I have everything figured out.  But what I do know is that I'm able to do what I do, and function, because of love.

This past Sunday, my family of 4 was out at breakfast after church.  Our server was very attentive to our needs and frequented our table.  Especially at the end of our meal.  Even after I sent the girls milk back for tasting "off," she presented at our table with a huge smile.  The last visit to our table she said "is there anything else I can get for you?"  Jake responded with "no thank you, just our check."  The waitress smiled even bigger and said "NO, your bill has been taken care of."  Jake and I both looked at each other, jaws on table, asking why.  She explained that she and another one of the servers had paid for our bill.  She looked at me and asked if she could hug me.  She told me that she recognized us and had seen our story on facebook.  She explained that she wanted to "pay if forward" to us for "doing such a good job and being an inspiration."  In that moment, if my heart could have exploded, it would have.  Jake and I sobbed.  I was so humbled and touched that this 20 something server was showing us this love and generosity.  This situation, this lesson, taught me how I want to be.  Generosity is a HUGE value that, personally, I've had to evolve with.  (another blog topic)  In a way I feel undeserving because I'm doing what I know how to do.  Loving my family, taking care of my children's needs, it's all easy.  I would take care of my girls for the rest of my life if I had to.  I appreciate the server's generosity so much.  I wish I would have asked her name.  I wish I would have found a manager and asked him/her to give their amazing servers a raise.  I told Jake that someday, when we are old, and it's our time to "pay it forward," I want to do things like this.  If we come across a special needs family, I want to buy them a pack of diapers, because we know how it feels to be recipients of love.

The #1 lesson I've learned having Liv is because of her perfect innocence.  Even though Livia can not speak, her actions speak volumes.  Livia thrives on being around others.  She loves to hold anyone's hand.  She stares into people's faces.  She especially stares at people who have a visible, loving, tender soul.  She knows.  Liv has taught me something that I know, without her, I would have never recognized.  We were created to love one another.  All she knows, all she wants, is to be near people.  If we all were that way, if we all just loved, wouldn't this world be a more pleasant place?

Colossians 3 

Living as Those Made Alive in Christ

3 Since, then, you have been raised with Christ, set your hearts on things above, where Christ is, seated at the right hand of God. 2 Set your minds on things above, not on earthly things. 3 For you died, and your life is now hidden with Christ in God. 4 When Christ, who is your[a] life, appears, then you also will appear with him in glory.

5 Put to death, therefore, whatever belongs to your earthly nature: sexual immorality,impurity, lust, evil desires and greed, which is idolatry. 6 Because of these, the wrath of God is coming.[b] 7 You used to walk in these ways, in the life you once lived. 8 But now you must also rid yourselves of all such things as these: anger, rage, malice, slander, and filthy language from your lips. 9 Do not lie to each other, since you have taken off your old self with its practices 10 and have put on the new self, which is being renewed in knowledge in the image of its Creator. 11 Here there is no Gentile or Jew, circumcised or uncircumcised, barbarian, Scythian, slave or free, but Christ is all, and is in all.

12 Therefore, as God’s chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness and patience. 13 Bear with each other and forgive one another if any of you has a grievance against someone. Forgive as the Lord forgave you. 14 And over all these virtues put on love, which binds them all together in perfect unity.

15 Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful. 16 Let the message of Christ dwell among you richly as you teach and admonish one another with all wisdom through psalms, hymns, and songs from the Spirit, singing to God with gratitude in your hearts. 17 And whatever you do,whether in word or deed, do it all in the name of the Lord Jesus, giving thanks to God the Father through him.

A trend that's actually making a huge impact, and you're annoyed.

The ice bucket challenge.  How many of us are so aware of this?  I'm sure somewhere in your conversation today, you will speak or hear about a bucket o ice!  Have you been challenged?  Taken the challenge?  Have no idea what I'm talking about?  Ask any random person to show your their Facebook, IG, Twitter, or even Google Nightly News, ice bucket challenge.  You will see video after video after video of people pouring ice water on their heads.

Jake, Finley, and I have even done it!

I will admit, I'm a regular on social media.  I have a love hate relationship with it, but none the less, I'm more addicted than I'd like to admit.  We all see things posted, tweeted, or pictures that we don't agree with.  We have that right to disagree or not "like" something.  We are all entitled to our opinions.  I'm not one to usually speak up about something I disagree with, unless it really hits me hard.  I don't like to stir the pot, per say, and avoid confrontation at all costs.  I like to keep the peace.

Last night was a different story.  I was scrolling through my Facebook news feed and saw a post from a so called "friend."  I can't give you every word they said because today this person's Facebook has been deleted OR I've been blocked.  So, the post went something like this.  I'm so tired of seeing all these ice bucket challenges.  I think it's just so stupid that people are doing this.  I'm so ready for this to be over so that my news feed isn't clogged with all these stupid videos.  Maybe I'm just a jerk, or maybe I'm just done with Facebook.

Along with all the videos circulating out there are articles people have written for and against the ice bucket challenge.  I've read both sides.  I've learned a lot about ALS and also learned that this challenge has raised millions for this devastating disease.  As far as the articles written against this challenge, the only thing that I can find in these articles that I agree with is that if you are dumping ice on your head on not making some sort of donation, your kind of missing the point.

So, my response to this person's post was this.  "I happen to think the ice bucket challenge is a great thing.  It's bringing awareness and funds to this life changing, terminal, no cure, devastating disorder.  But, hey, maybe I'm partial because my daughter has a terminal, no cure disorder and this ice bucket challenge has brought awareness and funds to our foundation that supports medical research.  I wish more people would stand up for these horrible disorders."  Or something along those lines.

Annoyed with your facebook feed being clogged with these videos?  I'm not sorry for it.  These rare diseases need a voice, and admit it, these videos of people dumping water on their heads made you smile or laugh.  It's trending now, so don't worry, a few weeks from now you'll probably see only a few videos a day. 

 My typical facebook feed reads a little like this:

• Please pray for my daughter, she had a horrible seizure last night and we had to rush her to the ER.
• My son actually smiled today.  I haven't seen that beautiful smile in months.
• What medication are you using for your child's movement disorder?
• I fear my son is losing the ability to walk.  What brand of wheel chair are you using?
• Today my worst nightmare is happening.  We have to say good bye to our 12 year old daughter.

So, you'll have to forgive me for being a little sarcastic and opinionated in this blog.  However, I will never apologize for being a voice for my daughter, her friends with MPS, or any other rare disease that needs to be heard about, funded, and for people to just gain compassion.

Not sure about ALS or what it's about?  I found this article to being extremely good.  http://www.bostern.com/blog/2014/08/15/what-an-als-family-really-thinks-about-the-ice-bucket-challenge/

And just as a side note, I'd dump whatever it took over my head to cure my daughter!