The Boston Globe You Guys!!!!

What an amazing whirlwind couple weeks!

The Boston Globe is going to be putting a piece together about Derek, The Dance Off, The radio interview and in general… how inspiring Derek is to all of us.

This Sunday the 4th.. Go buy a copy of the globe and let us know what you think! It will be in the GlobeLocal Section. Yay!!

We hope to see you next weekend at the Fundraiser in Chelmsford- it’s going to be a fun afternoon. If you need more details on that, keep scrolling down and the details are in a post below.

We also wanted to say thank you to everyone who took a moment to listen to the Radio MIx 104.1 interview this past weekend. If you haven’t heard it yet, and your interested… Just click on the link that says MEDIA off the home page and it will connect you.

We appreciate you!

Sarahjean and Derek

Radio Interview!!

This morning we were interviewed by Mike Mullaney over at Mix Radio 104.1 in Boston. What an incredible human being! Thank You Mike… Derek and I were honored to share this interview with Dr. James Berry and Sarah Luppino from the Neurology Team at Mass General Hospital. Herman- Derek’s caregiver and both kids we also involved and it was pretty magical!

Please plug in for the interview you guys!!! It is going to play this Sunday July 28th from 6:15am to 7am on 104.1

So great! Thank you for all your support.

(Listen to the interview)

Good Things!

There is a great song called 3 Little Things by Jason Mraz. If you haven’t heard it, take a listen.

In this exact moment- amongst all the movement of this disease, 3 little- but very good things are happening in our lives that we wanted to share with you.

Here’s Number 1….. This Friday we are being interviewed by radio 104.1. of Boston.

Derek’s vision of “The Dance It Out Challenge” has been really incredible to watch from the sidelines and now he has an opportunity to talk publicly about his vision. But there is still more... We asked Derek’s Neurologist and Head Nurse from Mass General Hospital to join us for the interview- and they accepted! How COOL IS THAT!! Such an honor.

Stay tuned… We will let you know when the interview is going to air…

Number 2! Our two very dear friends, Keri and Lauren are putting together the 2nd Annual Fundraiser for Derek this August. We tried to make sure that the invite made its way around, but in case this is the first you are hearing of it- we would love to see you! Here are the specifics:

August 10th at The Chelmsford Elks from 1-5pm

We are excited to announce that this year there will be a performance by Frank Santos Jr. Comic Hypnotist!!! We also have live music by Pianist/Vocalist Yvonne Aubert and Dj Wyatt will be back this year too! So please come and enjoy some GREAT entertainment, raffles, and catered food


And number 3: The Dance Videos! Thank you to each and every one of you that took a moment out of your busy lives to make Derek smile. It is an indescribably difficult and transitory time for Derek and we appreciate you so much. We will always hold you close to our hearts.

We didn’t think the videos could get any better- then WOW, Derek’s entire medical team from Mass General Hospital Got Into The Groove For Derek! If you haven’t seen it… You should take a peek on “The Dance It Out Challenge” page on Facebook.

We hope to see a lot of you in August. Thank you all for your continued love and Light,


Our Gifts- Meet Asuman

Hi There- Thank you all for following along with us. We would like to introduce you to someone incredible!

Right after Derek’s fall Asumen (AKA- Herman) became Dereks full-time caregiver. Over the past months we have all grown to adore him. Not only is he incredible with Derek and the kids, but he is also a creative, thoughtful and talented native to Uganda. After being with our family for just a short while- he wrote the poem below. We were wide-eyed by his talents and we hope you enjoy this share of his talents. Let’s all get to know Asuman a bit better!

Asuman Kazibwe, Native Ugandan has been Derek’s care partner since February, 2019. A care partner by day and a storyteller (through writing and film )by night. Back in Uganda his writings appeared in different magazines like Buzz teens magazine and you could find some of his works on “AITV” and “Catchyarts” both on FaceBook. Asuman aspires to being a positive change to the world through his arts.

Enjoy his beauty….


 His words are few and blurred

His movement slow and strained

One syllable costs him

What it costs you to run a mile

Speech is deserting him


The disease frightens them not

Not if you are with them

That is their main need

The reason he keeps talking  

The reason the keep smiling


Today its Derek

Tomorrow it’s someone else

We share this darkness

Or the light against ALS

Let’s stand and fight, together


On the brightest of mornings

In the darkest of nights

Derek takes a stand

And puts up a terrific fight

All ALS patients do


We know we need to fight

And win, possibly but

What do you do

When you lose or worse

When u can no longer fight


It changes you

It changes your dreams, your people

Your perceptions, your face, smile

laugh , voice, walk, sight, movement

It changes the way you breath



But they fight still, still hopeful

They still dream and plan and laugh

You see the fierce raw love

When he looks at his wife and kids

Derek and all ALS patients are still human.


The life in hiding story

The no human contact story

The maybe if I look away it will go away story

Ends today starting with me

I will not give them up


Don’t give up, you have me, we are here

When they can’t take it anymore

We love you, I love you. Derek

That’s all Derek cares for

All he needs, all they need is our love and understanding


#AhkKing #CatchyArts

Glances and Dances

Hi Again! 

As some of you may know, we just completed the set up of Derek’s Vision for a “Dance It Out Challenge!” 

This entry was written while Derek was in the hospital and I was trying to find the strength to somehow make his vision a reality!

Check out Derek’s vision of a “Dance Challenge for ALS” at:

Facebook: @“The Dance It Out Challenge.”

Thank you for following our journey.

We have many moments in our home that involve longing stares. We all seem to be doing it a lot lately. Glancing at one another while no one is looking. Caught up in the beauty that fills our home. Stopped in our tracks admiring each other with wonder.

Derek is only 45. Daily this thought slips through my fingers as I watch his body change every single day. We all see you Derek. 

I remember when I first meet Derek 16 years ago. We spent hours talking about life and legacy, visualizing the parts of life that feel good. I knew he was special, but I always thought that he would have more time to create his legacy. I always thought that when I turned around from creating mine, that he would be there smiling.

Today, Derek is reliant on support from machines. Tubes and the loving and attentive care of home care aids is what allows him to be. I can no longer move him at all. It’s near impossible to embrace him because it hurts his thin body. 

When the heavy hits, we stare. Stopped and watching each other.  “Let’s Dance,” he says. It’s the one thing left that we still know how to do. But inside my heart sinks. I am so sad watching him fade.

I tell Derek that he’s a warrior. His visions are now my mission. And my goal is to make sure that I feel his passion. 

We all know that life is short and that we never know what is lying just around the bend. Our young children watch this.  Their big bright eyes begin to glaze over the details of living with this unforgivable disease. I see freedom in their young souls, and confinement in Derek’s. I see vibrant, longing life in the kids, and shy peace in Derek’s. 

I am just here sometimes. Fighting to support both the bright and dim that lives in my home. I just offer myself.

Today is a note to say thank you to all who have offered themselves to Derek and the kids. And  to me.

May your day rise up strong to meet you. And we hope to dance with you!

May 2019 Update

It has been a while since any updates. With all the details surrounding us each day, I have been finding it hard to write. For the first time in my life, writing brought no peace. But something has changed over the last month and we thank you for sticking around. 

This entry will be purely an update on how Derek is doing and why we needed to sink our toes back into the earth and fall off the radar for a few months. 

Since our last update, which was about 5-6 months ago, Derek has changed quite a bit. Each day that passes we see change. Some are small changes and only require equipment or minor adjustments around the house. But some are so large that the kids and I are forced to a full halt of moving forward and his need requires full attention.

One of the largest changes found Derek and the rest of the family on Easter. 

Derek was having an amazing morning with the kids and me. We woke to Easter fun at home with Harper and Arlen. Derek was in an amazing mood, laughing and fully engaged in the details of being a dad on a holiday with two little kids. 

Later that day we were leaving my parents house to head out for Easter dinner. In a moment of Derek feeling carefree he decided to desend down a ramp without any guidance or use of his seatbelt. He was propelled from his wheelchair and landed face down on the pavement below.

ALS is a horrible disease, and falls are one of the most common and greatest risks. People suffering from ALS have to constantly be thinking about every single move and motion they make, or they can get hurt. For Derek, he says that it didn't even cross his mind that it would be dangerous. He just went right to the ramp like you or I would walk out of our front door, not thinking about a single thing. Auto-pilot if you will.

ALS also presents limitation with rigidity on the body. Meaning that Derek has no ability to break his own fall with his hands or elbows like we do. So when he fell, he landed directly on his beautiful face.

Derek was rushed to the emergency room where they worked frantically to rule out brain damage, blindness, paralysis and full independent respiratory function. 

I just climbed into the bed with him. I promised him that he would be ok. He didn't even know I was there. But it was all I had to give him- my promise.

Derek broke multiple bones his face and stayed at Mass General Hospital for 9 days as he miraculously healed. One thing at a time, we made our way through the whole list of possible medical obstacles that were presented to me in the emergency room.Derek is home now, but he is different. He can barely speak now and can no longer eat on his own. He had a feeding tube administered during his hospital stay. We were also instructed that he would need 24 hour medical care at home. Over the past weeks, since Derek has been home we have been adjusting to this new version of home. 

We all feel blessed to have found Asuman, who is Derek’s home care aid.  He is not only kind and brilliant, but he also loves Derek, and Derek loves him. Talk about big blessings! Thank You Asuman.

Since the sunshine has found New England, we have all been outside constantly. Derek rolls out into the yard and watches the kids and I dance in the driveway. (I think that neighbors think were crazy.) Or, he watches Asuman or I play basketball or soccer with the kids. We laugh a lot, but mostly we all just watch each be.

So blessed that Derek healed. So grateful for Asuman joining our family. So honored to have Harper and Arlen as my greatest teachers. 

Thank you all for following along our journey!!!