Happy Birthday Chi

Two years ago, we welcomed you to our family, excited for another addition.  We were so happy you had a full heart, after the journey we had with your sister.  Mommy and daddy loved you so much.  Sister loved you too.  Brother on the other hand was crazy about you.  He wanted to be by you and feed you and help you grow and show you the ropes from the second he saw you.  You were instant best friends.

We had so many plans for you.  We figured we had our trials with sister, so we were in for an easier path.  God, or should I say the world, had other plans.  We started to worry and then our worries were confirmed, you had a rare disease with no treatment and no cure.  Our dreams for you were broken, so we formed new ones, ones we could complete while we had you with us.  Some might call the collection of dreams a bucket list, but we called them memories.  We took you on a tour of some of the mighty National Parks of the West to some of the places we would have taken you.  We spent time outside as much as we could.  We enjoyed lanterns with you.  To the extent that you allowed us, we helped you live the best life you could.

Far sooner than we wanted to hoped, you left us.  You taught us so much, and you are still teaching us.  We ache and hurt for you every day.  We wonder what you would look like, what you would like and what you would not.  We dream about how you and your siblings would plan, love and fight together.  We miss you Chi.  We pray for you every day and keep your memory alive in our home.  We long for the day when we will meet you on the other side of the pearly gates with our Creator.  We love you Chi!!!

Wesley, Amelia, Mommy and Daddy.

Support

Kim and I have decided on a few options for those wishing to support us on the journey we are on.

- First and foremost, we desire your prayers for us!  We know God is with us and He will be our guide.
- Hunter's Hope is the leading Krabbe (and broader Leukodystrophy in general) organization spearheading the research for a cure.  We will be joining the Hunter's Hope Family at the end of July for a Family and Medical Symposium.  We have asked for details about how you can make a donation to Hunter's Hope on behalf of Charles.  When we have that info, we will update it here.
- The Ryan House is a complete Hospice and Respite Care Facility here in Phoenix providing amazing support and services to family's with children with extreme medical needs.  They offer a range of services from short, hour long times of full medical staff care to longer extended stay options for families to have the opportunity to spend time as a couple or as a family to rejuvenate, enabling parents the ability to dedicate the time needed for the 24 hour a day care some of these kiddos need.
- A family friend, who also lost their boy to a Leukodystrophy condition earlier this year, set up a YouCaring account.  YouCaring is a compassionate crowd funding service allowing support options for families facing various difficulties.

Thank you to everyone who has reached out to us so far.  Please continue to pray for us as we continue this journey.

Blessings

The Moodys

Service Times

Service times for Charles will be Friday, July 8th at 10:00.  Services will be held at Red Mountain Community Church.  The church is located at
6101 E Virginia St, Mesa, AZ 85215.  RMCC is just north of the Red Mountain 202 Freeway and Recker in Mesa.

Kim and I would be honored to have you join us to honor and remember Charles if you are able.  We are honoring our baby, and Amelia and Wesley and a few cousins will also be with us too, so we welcome and want your children of all ages to join us for the service!

Blessings

The Moodys

Today Jesus Called

And Charles answered.  Tonight he is walking, playing, jumping and singing while we are left crying.

Bask in the presence of Jesus, Cheezers!!!  Know that mommy, daddy, sister and brother will miss you until we cross those Pearly Gates and join you in worship of the King!!!

We have wonderful memories with you in cherished places!  All our love!!!

More Decline

Kim and I continue to notice small steps Charles is taking.  He moves his arms and legs very little now.  We have always explained this as he can and does move his arms and legs, but he just does not seem to want to.  They are very limp most of the time now.  Originally, we noticed Charles had what is called scissor legs, where he crossed his legs most of the time to look like open scissors.  He still moves his arms and legs and his legs still scissor, but it is mostly limited to when he is upset.  Many people have asked if he is in pain.  We think he may be, but we feel that is limited to when we move him beyond a small range of motion, so we try to move him as little as possible.  He also seems to struggle to pass gas and stools getting very upset when trying or not going for several days.  We are trying a few things from prune juice to using a suppository when the juice does not work.

We would also like to say a GREAT BIG THANK YOU for those who were able to join us last weekend at Chick-fil-A.  We had a great turn out and enjoyed talking to everyone and really appreciated the support you showed!!!  We should hear from Chick-fil-A this week for how much was raised.  The raffle was also a big success!  Thank you Renae for making that happen and organizing the entire event and for those who donated items for the event.

Blessings

The Moody Family

Support and FOOD!!! And an Update

A friend of the family has been thinking about how to support us with Charles.  Somehow, she got connected with a Chick-fil-A rep who offered to host a fund raiser event for Charles at their store!  Here is how it works:

• You show up
• Charles will be there too
• You eat food
• Chick-fil-A donates some money to help Charles
• Everyone wins (but don't ask me how Chick-fil-A wins in it...but they must)!!!

Here are the important details:

• Saturday, Jun 18th, 5:00-7:00 PM
• Chick-fil-A - SanTan Village.  2533 S Market St, Gilber, AZ 85296
• No cards, no fliers, no coupons, no anything needed...but you do have to order the $12.99 All You Can Eat Nuggets...Wait...what???  You get all you can eat Nuggets and Charles gets $1.00 of the sale amount?  That is a deal!!!
• So, all you have to do is ... wait for it ... EAT MORE CHICKEN!!!  Sorry...I could't resist!!!

So, come on out, eat more chicken and say hello to Charles!!!  There will also be a raffle with some cool stuff (don't want you in the dark about it)!!!

And, since we are writing...here is a quick update for Charles.  We have noticed some regression over the last month or so.  He has less movement of his arms and legs and has started to have more seizures.  They are not very severe and are pretty short.  He has also been getting a little more fussy but still tolerating feeds pretty well.

Please continue to keep us in your prayers and keep Charles in your prayers, and come eat chicken with us on Jun 18th.

Blessings

Amelia, Wesley, Kim, Brian and Charles!!!

Cherished Places

What do you do when you are told your 11 month old son has less than 13 more to live?

You take an RV Road Trip / Family Vacation to the places that are cherished to your family.  Places that are special to you now or places you want to be special to you in the future.  So, pack up the family and head out on a 2800 mile trip 4.1 states (being in Montana for like 5 miles counts as only 0.1 states…sorry Montana) to see 8 National Parks or Monuments we did!!!  And what an amazing trip it was!!!

We planned a large loop up to Yellowstone National Park with stops in Grand Canyon, Bryce Canyon, Calf Creek Falls, Dinosaur National Monument, Grand Teton, Lava Hot Springs Idaho and ended with a few days in Zion National Park.  Our goal was to take pictures and make memories, for far sooner than should ever happen, the only things we will have left are memories and pictures.  We also wanted to visit places that we knew we would be back to during our lives so we would have the opportunity to remember Charles and thank God for how He has blessed us in the midst of losing Charles.

The trip was such a sweet time for us.  We enjoyed time away from the routine of our life at home with Charles while seeing some amazing places.  This was really the first family vacation Amelia and Wesley were old enough to run around on their own on.  We were sad we could not do and see more, but we enjoyed every second of the trip.  A few of the highlights were:

·

• Amelia going on a 6 mile, round trip hike, with Brian to Calf Creek Falls…and walking 4.5 to 5 of the miles on her own
• Amelia and Wesley’s first S’mores Roasting 
• A few hours in the Lava Hot Springs pools in 45 degree weather.  This time was more special because Charles loved soaking in the warm water while either Kim or Brian held him.
• Amelia and Wesley officially sworn in as Jr. Rangers in Grand Teton National Park
• Seeing Amelia and Wesley experience their first wild animals in Yellowstone, including bears and bison
• Charles. He was content. He loved nature, the fresh air, the cold weather, the sounds of laughter...a lot of laughter, his stroller, his hikes in the rain in his stroller & constant snuggle time. He loved it!

We ended our trip in Zion National Park.  This was especially significant to us for many, many reasons.  Kim and Brian have enjoyed Zion on an almost annual basis from the first summer we were dating!  When we found out Amelia was sick, we planned a trip to Zion when she would have been 11 months old to give thanks for still having her.  When she went into heart failure, 5 months before the trip, we prayed we could still make it.  Those prayers were answered when we completed the trip, 10 weeks after her transplant and capped off the hardest year of our life until that point with a hike to the top of Angels Landing with our campus pastor from undergrad who also married us.  When we received the news about Charles, even before the shock wore off, before we could really comprehend what this meant and could wrestle with the “WHY” questions, we dreamed and asked if it would be possible to get Charles to Zion, to the places we loved, and the places wanted him to see, places like the Narrows and Angels Landing.  Angels Landing, with a 2 year old and a 4 year old, on top of Charles, was out of the question, but many of the other places were within reach.  We even had ice cream with him in Springdale, a nightly treat while we are in Zion.

We captured memories and pictures we will have for the rest of our lives and we have places to go back to and give things for the blessings we have in our lives!

Blessings

Amelia, Wesley, Kimberly, Brian and Charles