Dear Nate Berkus,

My friend Kim asked me to write about her cousin, Justin, and I even went to Justin’s house so that I could do a thorough job. Justin is a remarkable human being, as you are about to read. Kim submitted Justin’s story to Extreme Home Makeover, and, bless those people, they do wonderful work. But, Mr. Berkus, um, may I call you Nate? I hope so. But, Nate, I want you to read Justin’s story. I know it will touch your heart; how could it miss, your heart is so big. And I know that if you were to help Justin and his family, not only would you magically create a dream house that would also suit the special needs of Justin’s family, but you would bring more love into that house than there already is, if that’s possible. Truth be told, they have love to spare, so you’d get some too.

Love, Cheri

Why Not?

Imagine this: You are an active, strong, and healthy sixteen-year-old young man. In fact, you’re a star athlete. On a year-round basis you participate in sports, track & field, soccer, football, and tennis. You have won trophies, tournaments, and championships. And then one day you are out for a run, and your left foot “flops” just a bit. You stumble. Then over the next six months you find that your left foot flops and drops more often than not. Soon you are in and out of doctors’ offices. Podiatrists. Neurologists. Orthopedists. You begin wearing a splint. By the age of 18, you can no longer run. No more sports. By the time you begin college, you must wear a leg brace all of the time. But there is no diagnosis either. No answers.

That is the beginning of the story of how a progressive disease began to claim Justin Skeesuck’s body, starting with one foot and relentlessly working its way to his other leg and then up his body and down his arms. But this is also the beginning of the story of how one man would not let a progressive disease claim his heart, mind, and spirit.

Justin underwent a myriad of medical tests over the years, biopsies, EMGs, MRIs, and the like. Over the years doctors have monitored his symptoms, performed tests, prescribed physical therapy, and administered various drug treatments. In college, Justin needed braces and canes. Finally, the braces and canes could no longer sustain Justin and he was forced to use a wheelchair, which he has not been able to leave since 2006.

Justin was eventually diagnosed with a form of Muscular Dystrophy called ALS (commonly known as Lou Gehrig’s disease). Doctors were stymied by Justin’s symptoms as the onset of ALS typically occurs in older adults. This makes Justin’s situation that much harder. Not only is the early onset of ALS in Justin’s case unusual, but so too is how Justin deals with the disease on a spiritual level. Justin attends support groups, but it is he who typically provides the support for others, others who are often twice his age. As a mentor to others with ALS, Justin tells them that he doesn’t ask “Why?” His life motto is: “Why not?” He says that ALS has taught him to live life to its fullest while responsibly living within his means. So while the wheelchair has made it harder for him to get out of the door, he has made the extra—and often incredible—effort to mentor others, be involved with church mission trips, participate in the April 2006 Stride & Ride, and be featured in a segment on the Jerry Lewis 2006 Muscular Dystrophy Association Telethon – all to help others. Justin’s friends and family are rallied and poised to work again at the upcoming 2008 MDA Telethon.

While typical ALS patients are older and have raised their kids and retired from work, Justin and his wife, Kirsten, have two young sons to support, Jaden born in 2003, and Justin born in 2005. Justin is a self-employed graphic designer. Working mostly with computers, he has so far been able to support the family while operating his business from home. His desk and computer are in the family’s living room, where he can work and be part of his boys’ lives as much as possible. His home office is shared with two boys, toys, a dog, and the family television set. Kirsten is a nurse, and while they have had to put pride and privacy aside to rely on extended family to help with the care of the children in order for her to do so, she must work part time to maintain the health insurance that is crucial for Justin’s medical needs. As the ALS has recently progressed to claim all use of one of Justin’s arms, his ability to continue to work as a graphic designer grows weaker along with his body.

Now, imagine this: Justin’s wheelchair does not fit through the narrow hallways and doorways of his older home. So what breaks Justin’s heart the most? Is it that he was a star athlete and is now confined to a wheelchair? No. Is that he was a strong provider and is no longer able to support his family? No. Is it that he needs someone to carry him into his bathroom? No. What breaks Justin’s heart is that he cannot get into his young children’s bedroom to read them a story at night.

Justin’s family needs a small guesthouse on the back of the property they own in which extended family members can stay to help provide care for Justin and his children. Justin’s wife must continue to work to support the family and provide essential medical insurance. Also, the small main home needs to be remodeled so that the narrow doors and hallways are widened to accommodate Justin’s wheelchair. A guesthouse and wider halls and doorways are solutions out of reach financially for Justin and his young family, but not out of the realm of possibility in this world. So as we think about two young boys, tucked in their beds at night wishing their daddy could still come into their rooms and read them a bedtime story, we must ask ourselves the question that is Justin’s motto: Why not?

Dear Blog This Mom! Readers,

If anyone out there has Nate Berkus’s email address, send him a link to this, okay? If not, a petition to the universe will suffice nicely.

Love, Cheri

P.S. If you want to link to this post on your blog so that your readers will know about Justin too, that would be rad.

Justin & Family

54 comments on “Dear Nate Berkus”

  1. Oh, wow! Cheri–what an awesome post!!! What an amazing man . . . and amazing family. So, so deserving!

    I’ll go peruse the universe . . .

    Nate, Oprah, Ellen, Ty . . .

  2. Wow. If I knew Nate Berkus (or knew who he was), I’d surely send this his way. Do you know if there is an account set up to gather money to help these people get the work done?

  3. What a wonderful (and heartbreaking) story. And such a beautiful family!
    I do hope the people at Extreme Makeover respond.
    I’ll sign my name to that petition to the universe. And add some prayers of my own.

  4. I write this with tears in my eyes not only at this beautifully written post about an amazing family but also at the response you have already got from fellow bloggers.

    I will follow this with great interest from afar.

  5. We could all learn a few things from strength and dignity like Justin’s. Thanks for sharing their story. I’m signing the petition … and sending my thoughts.

  6. ALS; that disease strikes fear in me. (A couple of years ago, my symptoms were similar and it came up. So scary.)

    Thank you for posting this. Let us know if there is more we can do for Justin and his beautiful family.

  7. My prayers are with them – consider my name on that petition (as many times as possible!!!)

    I truly wish them the best, and hope some good things can happen for them.

  8. He DOES deserve it.

    When I was a kid, I had a neurological disease that almost killed me (and if it hadn’t, I should have statistically been in a wheelchair) so I always have a special place in my heart for people who live with neurological illness.

  9. I am on that petition to the Universe, Cheri. Very beautiful post. I have seen many sad cases in my work as a nurse- and most of them have wound up in nursing facilities because next to no one can afford those kinds of renovations. I pray that someone will come through for them!

  10. These are the kind of people that I think deserve help. They aren’t sitting on their butts waiting for someone to bail them out. They are working hard and making due. I hope they get it!!!!

  11. ALS is a truly cruel disease. A friend of the family had been suffering with it as well.
    Thank you for this story. It is inspirational.
    If you find out the email address we should all forward that letter with our names signed on it.
    Keep us posted!

  12. What a lovely post.

    Here’s Nate Berkus Associates’ fax number: 312.492.0666. That’s all I’ve got.

    I’m working on tracking down more contact info – we went to the same college and I hope they’ll help but I’m not holding my breath or anything!

  13. You have sent this to Oprah, haven’t you? This is an amazing tale of courage, I gotta think if you get it to the right folks, good things will happen for them:)

    I went to design school with someone who interned for Nate…I’ll see if I can dig them up…

  14. You are so good to do this! When my Mom was in a wheelchair, she had a similar problem with our small, old, narrow house. Good luck to Nate & his family!

  15. What a beautiful post. Thank you for sharing it with us.

    I found your blog through Amazing Trips, and I look forward to geeting to know you better through your posts.

  16. From your clickety-clacking fingers to God’s ears….I’m with myicecream diary, it would be nice to see someone who really needs that house makeover to get it. I’m putting my name on that petition too….I would also think that Ellen would be the better one to get to….maybe I just like her better…i dunno.

    This was an awe-inspiring post…you done good!!

  17. That gave me chills. When I started this whole path with MS one of the things they were concerned about was ALS….so, so scary! I hope this wonderful husband, father & person gets this dream so, so much!!! I just can’t even imagine not being able to put my sweet girls to bed…..
    Thanks for bringing it to everyone’s attention. Do you know if this has been emailed to Oprah?

  18. You’ve done a wonderful thing here. I hope beyond hope that it comes to fruition. Seems like a small thing in the universe that would mean a world of difference to this family.

    Come on Nate! Do it!

  19. I just told my son this story. I don’t live in the States and thus don’t know that show.

    It is imperative however that Justin’s story be told and re-told.

    My prayers are with him and his family.

  20. Dear Nate, This is not about the mom blog but I really want to tell a story about a very special person her name is Michelle she is a single mom raising two boys on her own.She has MS and also other illnesses from a beating she had gotten from a past relationship that has left her disabled.She works at a mission here in town handing out food,clothing,furniture,etc.She does what she can to help others but she never is able to do anything for herself.She is barley scraping by. She believes that people should get what they need so she is there to provide for them what she can.I have seen her take a sweatshirt of to give to a little girl because she liked it. She is amazing all the things she does as sick as she is.The reason why I am writing this is because I was wondering if you maybe could take some time to just recognize all the special things she does for others. she is my sister and I have never really appreciated her or even took time out to care if she was sick or not. I realize now what kind of person she truly is. So please Nate help me to make her feel special for one day I really need help I cant do it on my own.Thank you so much and GOD bless my number is 1-603-714-1373 so please contact me or email jenifer_trampe@yahoo.com
    hope to hear from you soon !!!!!!!!!!!!1

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