This Video Could Save Reed's Life

6 Month Check Up

Yesterday we met with our Neurologist for our 6 month check up. All things seem to be going okay. He felt the tightness in Reed's hips and legs needed some attention so we are going to try some Botox injections in his legs to see if that will loosen things up. We decided to go this route rather then using drugs as we would like to keep drugs with side effects out of Reed's body as much as possible. We hope this will allow Reed to relax a little bit more in his lower body.

Other then that things for Reed seem to be going okay, he is losing some trunk strength and starting to show signs of struggle from going from belly to pushing himself up to sitting.

These things are things we knew we would face and are not surprised by them. Reed also doesn't seem affected by them he still is his crazy happy self. We still fight this fight and still have faith in a treatment or cure for Reed.

Happy 4th Birthday Reed!!

HAPPY 4th BIRTHDAY sweet Reed!!!

How is it that you are four already, how is it that four years have passed already. Reed you are the light of our life, your beauty inside and out is one of a kind. You will probably never understand how you have affect peoples lives. Reed you are an amazing boy, so smart, loving and happy, you are so determined and love so deeply, your smile is going to take you far in this world. You love your mama and daddy deeply and are your mama's "super hero" you keep her head on straight for her by having the best memory. Reed God has big plans for you, plans to share your story, plans to share about God's love and mercy, we truly believe that God's plan for you is bigger then we know right now. HAPPY HAPPY 4th BIRTHDAY to our "big boy", we hope your day is as amazing as you are!!! You are our light and our world Reed.

"For I know the plans I have for you declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11"

The Wheelchair Arrived

Today was a big day, tears this morning of uncertainty brought smiles in the comfort of his own home! Papa and him took the wheelchair out for its first public outing tonight to cubbies at church!!!

November 1, 2014

November 1, 2014 is now knows as dooms day in our house. This was the day we first saw the signs of Vanishing White Matter.  This was when our lives changed forever.  What seemed like a normal day, I actually took Reed to Club Volleyball Tryouts so that he could run around the gym.  As we walked into the gym my dad and I noticed some abnormalities in Reed's walking but he seemed find otherwise.  If I remember right I think he had some new shoes on also so maybe I chalked it up to that.  My mom came up a few hours later to pick him up and noticed the same thing, she took him back to there place to put him down for a nap.  From there is where our living nightmare took over. When I got to my parents house to pick him up he was still sleeping so I woke him up and set him down to be on his way, it was from that point that his walking took a drastic change, his right foot turning in, falling ever few steps. Trying to remember did he fall at the gym, did he complain about anything.  A call to Jesse to come over and take a look at him and then a call to Urgent Care had us going in for x-rays and blood test.  It would be another 4 months before we got an answer.  

Vanishing White Matter has taken so much from us, we live in fear many days, fears of a cold, fears of a fever, fears of whats to come.  They say average life expectancy for Vanishing White Matter is 5-10 years from onset of symptoms so that means today we head into year three of onset (to be raw here typing that and the realization of what that could mean started the tears).  But Vanishing White Matter has also taught us so much as well.  We would trade an infinite amount of things to not know what Vanishing White Matter is.  But it has brought us closer together, it has taught us to appreciate every second, minute, day.   Reed has taught us to smile more, live in the moment and to have HOPE and never give up.  He has taught us how to fight for something and to truly believe in any possibility.  

Here is to FINDING A CURE IN FOR VANISHING WHITE MATTER in 2017!!!

Pray

Days after November 1st when doctors thought it was just a crack in the knee, at the time we didn't know better but we should have asked for another x-ray to be done. He never regained the ability to fully walk after the cast came off.

Summer 2016...

One memory of Reed walking that sticks out in my brain is watching him explore our yard at our old house, I was sitting on the patio and he went off on his own; discovering.  I am not sure why this memory sticks out in my head so much, maybe it was the independence of it all. This was late summer 2014, little did we know that he would only have a few more months of walking.  I can remember during this time thinking it was strange that we never seen him run like other toddlers but didn't think to much of it at the time, now looking back at it we now know why.  I think about these kind of things usually on nights when sleep doesn't come or is a struggle for Reed to sleep.  Last night this was the subject on my brain.

But on to why I am really writing this post, I have been wanting to write about our crazy busy but amazing summer for weeks now but have just struggled so much with motivation to actually sit down and write out all that happened because it was a lot.

Summer 2016 was busy, I think when we look back at the summer we had maybe only 2 or 3 weekends where we didn't have something going on.  Busy is good but busy is also exhausting and then add a handicap child on to the mix it adds a whole other level to the busyness.  I am going to have to go back and look through out calendar I think to write this post and also try and remember to write everything that happened.

Lets start with May 13th, - Team Reed Glow Run 5K - what an exciting event this was for us, we had over 300 participants it was a cold night but we couldn't be more happier with the turn out.  This event defiantly set the bar for goals for our events for next year.

The next few weekends were filled with graduation parties and our first weekend camping for the year, and Reed caught is very first fish!!

June 11th we held the Team Reed Golf Classic, which was another great event, we had 30 teams signed up which made for a full day of golf.  Between the 5K and Golf Classic we were able to send a check for $20,000 to VWM Research is Israel.

Then we followed that up with Aunt Becca's wedding!! Cutest ring bearer I have ever seen!

To end June out The Jesup Softball team held there Blue out for Reed night, where the crowd was asked to wear blue for Reed, Reed got to throw out the first pitch and was the guest of honor.

Also in June we had our 6 month check down in Iowa City, all was well not much in terms of news or changes for Reed on a health stand point.  No news is good news, right?

July brought a low key 4th of July and we road trip up to Prairie Du Chien for the day to do some exploring. Farmers Day was to follow which is always one of our favorite times of summer.  And Wheaton Franciscan held a jean day for VWM Research and raised an amazing $1200.

Next up for our July was Kids Captain Photo/Video Shoot, We are so excited that Reed was selected to be one of 2016's Iowa Hawkeyes Kids Captain, he was choose to be the honorary captain at this years post season game.  As part of being the Kids Captain we received a special behind the season tour of Kinnick Stadium, got to meet players and coaches and get autographs.  Reed was showered with gifts, a jersey, a new Hawkeye shirt, poster, trading cards of Reed, black and gold m&m's among a few other things as well as 4 tickets to this years Homecoming game.

Then we got in a little family swim time, an adult evening at the Great Jones County Fair for the Boston Concert and then the ZOO!!!!!

August brought another camping trip, Kids Day at Kinnick, a free weekend for once, Cousin Jordan's arrival, Reed's first day of Preschool and the Kris Walter's Golf Tournament where we were the sponsor on hole 5 and ran a game to raise money for VWM research, only to be surprised by given all the proceeds for the tournament to go toward reserach, $5000!!!!

September we didn't slow down...September is Leukodystrophy Awareness month so with that I participated in a 30 Sit-Ups for 30 Days challenge, as well as we held our annual wear blue for Reed day, Cubbies started with papa, we spent a weekend away with friends, the Jesup Volleyball team held a blue out night for Reed. Can I just say how floored we were by both teams at the blue out game their love and support for Reed and our cause is so great we just couldn't be more proud to be apart of such a great community and volleyball family. Plus an additional $100 was raised for VWM research!! To top off the month we end it with winning the proceeds from the Taylor Morris Glow Stick 5K, Reed was voted most inspirational story and received $10,000 to go towards VWM research!!

It has been a great summer, we have tried our best to fill Reed's life with as many experiences that we can.  We have tried to stay proactive in fundraising for research and hold or participate is an event every month this summer.  Now on to October which is starting out to be just has great of a month as the others....

Changes...

Jesse and I are often asked, how is Reed doing?  Usually the canned answer is "he is doing okay, holding steady from what we can tell".  But the truth is he has declined, it seems like a slow decline but yes a decline.  Reed has recently started to like a photo books of us before bed.  It shocks us as we look through the photos from just a year ago, to 6 months ago to see where Reed was at physically.  

100 weeks ago, standing on his own with great balance and hand control

91 weeks ago (November 2014). first sign of symptoms 

84 weeks ago, still standing strong

75 weeks ago (February 24, 2015), MRI

72 weeks ago, can still sit with feet in front of him.  Now he doesn't have enough trunk support to sit this way anymore.

70 weeks ago, signs of right foot turning in and starting to point

66 weeks ago, still loves the water.  Now it is a struggle to take a bath or get him to want to explore the water.  Has the sensation of falling with the water around him.

65 weeks ago, still standing strong

55 weeks ago, still enjoys baths and spends hours in them. Now he is in and out in less then 2 minutes and cries the whole time

39 weeks ago, this is now his standard form of sitting and has caused a lot of tightness in his feet

33 weeks ago, needs help sitting now

7 weeks ago, no longer can stand needs help with hands under arms to try and walk but drags feet, sitting with feet tucked under him because this is how he feels the most sturdy

6 weeks ago, helping him walk, a desire he still has and his brain is still telling him to try and do

A mom of another VWM child recently posted these thoughts and I couldn't agree with her more ( I added Reed's name to this). "I believe that if your child suffered from just one of the following in their lifetime that would be reason enough to make you want to find a cure and fight VWM disease. But for Reed to possibly suffer from all of the following before reaching his teenage years is the reason enough why we fight day and night to save his lives." (which we know is what any parent would do)

As the disease progresses, Reed can expect some or all or the following to happen to him 

• Unable to walk - Reed can already no longer walk
• Unable to talk - Reed's speech has already delayed
• Unable to eat/swallow
• Unable to sit unassisted - can't sit with feet infront and at times loses his balance with feet tucked under him 
• Unable to use his hands - Reed’s hands shake which cause a lot of struggle with a lot of everyday fine motor skills
• Loss of head control
• Epileptic seizures 
• Spasticity - already affecting Reed's legs, right side more the left
• Vomiting – Reed has episodes with bad stomach which sometimes results in daily vommiting for a few days and then it is gone for months
• Irritability – Reed shows signs of frustration when physically trying to do something he can't 
• Mental retardation
• Blindness
• Deafness 
• Coma - some patients die during the coma; others recover slowly, but never to the same level as before
• Death often before reaching teenage years

Again I know we say this a lot but we truly believe Reed will be a part of the cure, we know patience is a virtue we work on daily.  At times it is so frustration waiting, feeling like we are not doing enough.  Hoping, praying that funds will be raised and progress will be made before Reed gets to far in the progression of Vanishing White Matter. 

Thank you for being my superhero!!!

To all that either helped, participated in or contributed to the Team Reedfundraising events we wanted to say a HUGE thank you…because of you all Team Reed will be making a donation of $20,000 to VWM Research, that will bring the Team Reed donations up to $22,705 (including the Crowdrise donations), with hopefully more to come!!!!

Whether it was a donation made, a rainbow challenge photo, a sponsorship, a jean-day or lunch fundraiser held at work, cupcakes sold at school, purchase made from the 31 party, or participating in or helping at the 5K or Golf Tournament you all have made a huge impact on the research to help find a cure to help save Reeds life and others with Vanishing White Matter. As we continue the fight we know all the love and support for Reed and our family is unmeasurable, thank you will never be enough in our eyes, your contribution has given us hope for our son and hope for a day where VWM wont define Reeds life!

Thank you for the generous donations made by these business's and people for the specific planning of the 2016 Team Reed 5K and Golf Tournament!

Action Signs and Shirts, Allie Eyanson, Bell Tile & Design, Bucketz, Chris Fischels, Computer Troubleshooters - Cedar Valley, Dairy Kone, Dave Sabers, Deery Brothers Collision Center, Dream Chaser Acres Pet Resort-Dog and Cat Boarding, Farmers State Bank, Fred Miehe Jr, Fortitude Volleyball Club, Gerry and Shelly Weber, Hershberger Tiling, Inc., Inspired Living Chiropractic, Iowa Laser, Jesup Citizen Herald, Joe's Pizza Jesup,Kris Walters Memorial Page, Legendary Motors Traer, Monat Wealth Management, Rach's Kitchen, Tina Geweke, Remax Home Group, Revive Bodyworks, Saved Thyme, Sackett Photography, Spahn & Rose - Jesup,Sulentic Fischels Commercial Group, VGM Fulfillment, Waterloo Golf Headquarters, Wax and Glow

Reed Update

REED UPDATE: 

I wanted to get back to why people belong to this page in the first place to hear about how Reed is doing and get updates on him.  Today we headed down for our six month check up with Dr. Perlman.  The appt went good and things seem to be holding steady at this point with Reed's health.  During our discussion with Dr. Perlman we talked a little about some stiffness in Reed's legs and we were all on the fence on if we should start Reed on Baclofin.  Up tell this point we haven't had to put Reed on any meds and we were wanting to keep it this way as long as possible. Dr. Perlman was also on the fence because Reed's stiffness seems pretty minimal and not affecting his ability to get around but he also thought it might help make a little bit of difference in some daily function.  It was decided to try a small dose to see if we notice any difference or not. We both have mixed feeling on this as we are not big meds people so this is a hard one for us, as like most medicine there are benefits and side effects and some of the side effects to us seem worry some but also those side effects are in very long term use as well, but still scary because you never know.  I also wanted to update on why the sudden urge to fund raise so much for research, there are a handful of VWM families around the world trying to raise 2.6 million dollars which is needed to help speed up the research process and hopefully start some human clinical trails. Since VWM is so rare the research doesn't have big money backing it so we all are doing what we can to contribute and save our kids. We recently found out that so far 2016 what has been raised for VWM research is just under what had been raised in the last three years combined! But we are still only 15% of the way to our goal. We are fighting hard for Reed as anyone would do for there son and the Team Reed family has blown us away with all the love and support for our boy, this little community has made a huge impact with a small voice and small reach through social media we couldn't be more blown away by you all!!! So I want to finish with some prayer requests, please pray for the meds situation and comfort for us, as I am feeling a little uneasy about it.  Pray for the research, for the researchers and for the fundraising.  It is a hard thing for us to continue to ask over and over again for your financial support but please know you are making a difference in what will be a treatment/cure for VWM, your contributions are making a huge impact and will make a difference in the lives affected by this disease.  So thank you for your support and your continued support!! 

https://www.crowdrise.com/findacureforvwm/fundraiser/erikamealhowhavlik

The things we think about...

The things we think about...

Our three-year-old son was given a death sentence, and we just have to sit back and watch. That is our reality, ever heard of Vanishing White Matter, we hadn’t either but this disease is a reality of roughly 170 people mostly children worldwide. That is a hard number to wrap your head around, 170 people, someone give me the odds on two people with the same mutation finding each other, falling in love and having a child with VWM. Vanishing White Matter is a degeneration of the brain, the white matter in Reed’s brain is vanishing and as that happens his body will go with it until it kills him.  VWM has robbed Reed of the ability to walk, and causes him some shaky hands and struggles with his speech.  VWM is a genetic disease and both parents have to give the mutation in order for the child to have it.  Reed’s expected life span is 5-10 years from the onset of the disease we are now in year two.  Reed started his fight to find a cure for VWM on November 1, 2014. Reed was born on December 3, 2012, a normal pregnancy, a normal birth, a normal baby, a normal toddler, and then, on November 1, 2014, Reed went down for a nap and when he woke, he struggled to stand and take steps. After no clear answers as to why this was happening, we headed for University of Iowa Children’s Hospital to see a neurologist.

On February 25, 2015, Reed was diagnosed with Leukodystrophy and then Vanishing White Matter.

There is no cure no treatment and no big money pushing the research for a cure. As a human you would never in your wildest mind want to feel jealous or want for your child to have a more common disease, a disease that gets more attention, a disease where money is being spent on research, a disease where there is HOPE for a longer life.  But we would be lying to ourselves to say that we haven’t felt that or wished for it.  How would you handle a death sentence for your only child, how would you handle being told you probably shouldn’t have any more children, how would you handle being told to make the most of the time you have.  We hurt so much for our son, we hurt for his desire to do the things he struggles with, we hurt for him because he doesn’t understand why, we hurt for him because we want “normal”, we hurt for ourselves because we know people just don’t understand.  The emotions you feel for others and how “lucky” they are, it is a struggle we face every day, you feel like an outsider, you feel like you can no longer relate to people.   The things that were easy are no longer, can’t just pick up and go, things you would do as a family need modification, carry around a three-year-old because they don’t understand that they can’t walk is exhausting, mentally sometimes more than physically.  Going to friends or an outing where the kids are running in and out is almost torture as parents, you desire for your child to be included and a part of something because he is different but the work involved to help him have a good time is a challenge, he can’t just follow the other kids.  It hurts, it really does to watch his eyes to see him take in his surrounds and try to push forward as the others do.  We tell ourselves that he doesn’t know any different this is the life he knows but he does he is starting to understand and it just flat out isn’t fair.  We dream for a day, week or month on no medical/therapy appointments, we dream for a trip to the park where he can run and climb without help, we dream of a bath time where he doesn’t feel like he is going to fall the whole time, we dream or seeing him run again, we dream for independence of our son. 

And we dream of a cure for our son…

We are choosing to fight for our son, we are choosing to be his voice, we choose to give him “normal” the best way we can, we are choosing to not accept his death sentence and choosing to believe that he will be a part of the something bigger, be a part of the cure, be a part of the reason this disease is no longer in existence any longer. 

Do you choose to be a part of something bigger as well, do you choose to save Reed’s life? When hope feels like it can’t be found for Reed there is a small number of families that are not taking no cure for an answer there is positive research very underfunded research being done in Israel and the Netherlands, we as Reed’s loved ones, we as VWM patient loved ones are choosing our battle and choosing to fund this research one penny at a time if we have to, we are choosing to speed this process up so Reed can have a long life, a “normal” life. 

Please be a part of it one penny at a time as well…

https://www.crowdrise.com/findacureforvwm/fundraiser/erikamealhowhavlik

and the WINNERS are...

We wanted to say a HUGE thank you to all that came out and support Reed and Finding a Cure for VWM on Friday night, it was a cold one but you all stuck it out and we couldn’t be more blown away by the turn out. In all total fundraising efforts for Team Reed this far, between Crowdrises, Rainbow Challenge, private donations, Team Reed Glow Run 5K, sponsors for both the 5K and golf outing, corporate events (food days by Iowa Laser), cupcake sales as a school project! We have raised roughly $17,244.97!!! With a few more events in the works we are excited to see where this number climbs to. If you know any golfers in your family, please direct them to our golf event page!! Because of the generosity of you all finding a cure for Reed and others around the world with VWM is truly possible, thank you from the bottom of our hearts for being a part of the cure. Our goal to reach that 2.6 million seems so possible through the efforts of you all and the Team Reed team and others that are doing their part through Saving Chloe Saxby and others as well!! We would love to team up with others to increase our fundraising efforts if you have any ideas or opportunities you would like to share please reach out to us. For example, if you work for a company that has sponsored jean days or food days where a donation allows you to wear jeans or eat a prepared meal (one company did a walking taco day) we would be honored to team up with you! Again thank you for being a part of our fight to save Reed, we truly believe that Reed will be a part of a cure to end VWM for all!

And finally we have some prizes to still give away from the 5K, with the temps the way they were we understood completely if people didn’t want to stick around for awards. If your name is on this list and you didn’t receive your prize, please notify us.

Overall Male Winner: Devon Gurnett

Overall Female Winner: Maddy Eckholm

0-12 – Male
Wyatt Vanderwerf
Caleb Coffin

0-12 – Female
Laney Pilcher
Katie Clark

13-20 – Male
Alex McCombs
Jase Pilcher

13-20 – Female
Grace Thompson
Madeline Rummel

21-30 – Male
Devon Gurnett
Logan Bine

21-30 – Female
Maddy Eckholm
Kasey Widdel

31-40 – Male
Brad Wilson
Sam Dirks

31-40 – Female
Rachael Dahl
Annette Pilcher

41-50 – Male
Jason Pilcher
Brian Gorman

41-50 – Female
Lyndie Decker

51-60 – Male
Darrel Maines

51-60 – Female
Kerri Larson
Kim Zahari

60+ - Male
Paul James

60+ - Female
Peggy Watson
LouAnn Frush

Best Neon/Glow Outfit Goes to Maddy Eckholm – Revive Bodyworks gift card

Random Drawing Winners:

Winner of a Saved Thyme Gift Card – Trisha Fuelling

Winner of a Dream Chaser Acres Pet Resort-Dog and Cat Boarding gift Basket and gift card – Holly Risetter

Again thank you to all that participated in the 5K either by running/walking/volunteering or sponsoring, without any of you this wouldn’t have been possible.

Thank you to all of our sponsors as well:

Action Signs and Shirts
Allie Eyanson
Bell Tile & Design
Computer Troubleshooters - Cedar Valley
Dave Sabers
Deery Brothers Collision Center
Dream Chaser Acres Pet Resort-Dog and Cat Boarding
Farmers State Bank
Fortitude Volleyball Club
Hershberger Tiling, Inc.
In Memory of Dale Weber- Gerry & Shelly Weber Family
Inspired Living Chiropractic
Iowa Laser
Jesup Citizen Herald
Kris Walters Memorial Page
Legendary Motors Traer
Monat Wealth Management
Primetime Sportswear
Tina Geweke, Remax Home Group
Revive Bodyworks
Saved Thyme
Spahn & Rose Lumber Company
Sulentic Fischels Commercial Group
VGM Fulfillment
Waterloo Golf Headquarters
Wax and Glow

The Rainbow Challenge

THE RAINBOW CHALLENGE!

Here is how to play:

1.    Take your photo with a Rainbow, you can use Reed’s rainbow attached to this post or Chloe’s Rainbow or both, it can also be found to download on the Reed’s Blog, or just draw one!

2.    Post the pic on Facebook, using #TeamReed #SavingReedandChloe ‪#‎SavingChloeSaxby #VWMRainbowChallenge, ‪#‎Findacureforvwm ‪#‎RainbowChallenge if you would like we would love for you to tag the Team Reed Page also, and tell us where you are located!

3.    Then donate $5 at https://www.crowdrise.com/findacureforvwm/fundraiser/erikamealhowhavlik or  http://www.savingchloesaxby.com 

4.    Tag & Nominate 5 of your friends for The Rainbow Challenge so we can spread the rainbow around the world

5.    Copy & Paste the above instructions for the next person

#TeamReed #SavingReedandChloe ‪#‎SavingChloeSaxby #VWMRainbowChallenge, ‪#‎Findacureforvwm ‪#‎RainbowChallenge

Note: don’t have a way to print the rainbow, that’s okay you someone else’s phone or tablet to pull it up or just any picture of a rainbow and take a picture with that.

Don’t need to be tagged to participate J the more the merrier, don’t forget to copy this text and include it with your picture and donate!!