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Misty VanderWeele 53, Female Palmer, Alaska United States: Favorite

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DMD RECIPE IDEAS

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For DMD parents by Dr Rhodes about STS Treatment

Started this discussion. Last reply by pop jarvis Mar 3, 2011. 1 Reply 0 Favorites

Our son's and sexuality

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Friends aren't lining up at the door??

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Lets turn our HOPE for a CURE into *ACTION!

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About me:: Hi there!

My name is Misty VanderWeele, thank you for stopping by!

http://MistyVanderWeele.com

Before I jump into why I am here and who I am. I wanted to take a moment to tell you, Yes, Duchenne Sucks, but don't let it rob you of what is most precious. Time with your family. You must consciously create a life full of love, laughter and happiness. NONE of us know when it is time to go or how it will happen. So be sure to grab the reins, your job as a Duchenne parent is the same job as any parent. And that is teaching your children to live on their own as independently as possible. We owe all our children that especially our children with Duchenne.

With Duchenne comes great opportunity to witness life's miracles more than EVER. I know this because...

I've been on the Duchenne roller-coaster for sixteen plus years. My son Luke was diagnosed when he was 4, he will be 20 on December 22, 2011. Yep, my almost Christmas baby. I literally went from fetal position to living a life I had never dreamed of. With my dream guy, my hero and beautiful daughter. I share the first 14 years of our journey and how it has impacted our lives in my first book In Your Face Duchenne Muscular dystrophy, All Pain, All Glory.

Who am I?
I am a wife to a really great guy. We live on the family vegetable farm surrounded by the mighty Alaska mountains, it's a beautiful life. I am a mom of two great kids. I am living my life's purpose through being a Duchenne Advocate. Luke my oldest and then comes my daughter who is 12. I eat completely gluten/grain free, I love to cook, listen to all kinds of music -dance and my toe nails are always painted. I am also a purple FREAK! I mean freak. Purple clothes, purple office, purple lamps and ink pens, even my wedding rings are purple. You name it I most likely own it in the color purple...

What brings me to the Parent Project Community?
Most likely what brings you here...Duchenne. I started following PPMD back in 1998 and have watched them evolve into a mighty big influential force they are today. Alaska is a big state with a very small population and limited resources. PPMD has helped me allot with the information I needed when I needed it. In 2006 I ran the half marathon, Run for Our Sons. Then the following year ran in the first "Rocky Run" up the those famous steps in Philadelphia!

Founder Pat Furlong submitted a story for the first ever Duchenne-Parent Collaboration Book Saving Our Sons One Story At a Time published in June 2011. It has over 38 Duchenne parent stories meant to uplift and educate the world about Duchenne!

I invite you to come connect with me at:
Facebook:http://facebook.com/mistyvanderweele

Twitter: http://Twitter.com/mistyv

You Tube: http://www.youtube.com/MistyVanderWeele

About my family:: My husband, Glen, my daughter who is 12 and I live and work on the family farm. And our Luke recently moved in to sort of a half apartment his dad built for him off from the family room in their home. Luke is in charge of all his own care staff and getting to and from appointments. He strives to live as independently as possible and we couldn't be more proud!

Name(s) of child(ren)/individual(s) with Duchenne:: Luke, 19 DMD, Jenna 12 carrier status unknown at this time

Age(s) of child(ren)/individual(s) with Duchenne:: 19 or older

City:: Palmer, Alaska

Silver Lining

Duchenne (DMD) has forced me to look at the silver lining amongst the clouds of the dark night for over 12 years now. And I must say has been both the worst and the best thing that has ever happened to me. Facing the probable outcome of early passing of my son while still holding onto despite hope has taken more, strength, love and courage I have ever known existed within me. We have had articles written about our journey with DMD, have appeared numerous times on television, Luke was the Poster Child for the Alaska Chapter of Muscular Dystrophy for 2 years, he has helped raised thousands of dollars for the cure, Full time wheelchair usage by age 11, he is on his 3rd one now!, Been given trips to Disney World, has had a "9 hour" spinal fusion surgery and heal cord lengthening surgery. Luke was given a Lap top computer by Excel Physical Therapy. UPS store granted him an extra hospital bed for dads house. Has an incredible step dad, step mother, sisters, brothers and extended family and has had thousands of angels in the shape of friends, family, teachers, strangers and personal care attendant's who have all graced us with their, love support and compassion the entire way. Bless you ALL !! You know who you are. But the best part is LUKE. He is the strongest person I know. He faces life with gentle love and eagerness that blows my mind, brings many a smile to my heart, tears on my cheeks and the music of laughter to my ears. Luke you are my hero. I love you son!

Misty VanderWeele's Blog

Luke is a SENIOR !!

Posted on September 3, 2009 at 9:09pm 5 Comments 0 Favorites

I feel deeply blessed, Luke is still with us. This is the first time I thought I could write, you see I didn't believe Luke would live past 14...NOW HE IS MY SENIOR!!

After his health scare last year things have been AWESOME...he started using a bi-pap at night for sleep...his heart rate is normal and his appetite, well lets just say...TEENAGER !!

Luke will be 18 in December!!! Is going the entire school day not because he has to, but because he wants to, he only needs 3… Continue

Go Forward... Step Back..Breath...REACH OUT!

Posted on July 15, 2009 at 11:28pm 2 Comments 0 Favorites

July 24th will be 13years on this DMD journey with my son...I must say it has been one heck of a ride! Luke is now 17, going into his senior year which I never thought would happen...He just took his college aptitude test...he is going into AutoCad...He is smart, compassionate, caring, brillant with a great sense of humor and I can honestly say we are friends tackling this DMD thing together!

Here are Luke's chapters from his life journey:

Crawled at 8 months

Walked… Continue

Re-authorizaton of the MD Care Act.

Posted on July 3, 2008 at 1:17pm 2 Comments 0 Favorites

I just sent this letter to all my Alaska government officials to get them to sign the Care Act today. I feel totally uplifted!! Thanks to PPMD's incredible website. They have made this process incredibly easy. Go to their www.endduchenne.org website and check it out. Look under tab, Speak Up.

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My name is Misty VanderWeele a born and raised Alaskan. I live and work here on the family farm in Palmer. My 16 year old son Luke,… Continue

The George!

Posted on June 27, 2008 at 1:47pm 3 Comments 0 Favorites

Anyone one of you that uses a urinal will understand this. The last thing you want to do is ask your son do you have to go pee or worse, do you need to use the urinal. I was completely thrilled when Luke came home and said "it's George time", I said "what??" He repeated "its time to use the George, you know mom, when people say they need to use the John, my aide at school come up with calling the urinal (George) so nobody knows that I have go." I thought how clever and very funny. Now… Continue

Today: Praying for Strength,

Posted on June 20, 2008 at 2:00pm 1 Comment 0 Favorites

Today I am patiently waiting for my sons blood tests results. Since Feb. he has had a very high heart rate 115-142bpm, has lost about 15 or more pounds and at this moment we don't know why. I am trying not to worry about the unknown. Because worrying is like rocking in a rocking chair, you are going back and forth without going anywhere! I keep telling myself, Misty his heart function is fine, his oxygen levels are great, he has done very well up to this point so STOP!

I found this quote… Continue

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At 2:13am on December 5, 2010, Leeandra Arhdeacon said…: ;)

At 2:53am on December 8, 2009, Christina said…: I have not gotten the Survival Kit, yet. I'm not quite clear how to - maybe I'm not doing something right? I did watch the video you posted a day or so ago, is that part of it?

At 8:39pm on December 3, 2009, Christina said…: Good! Thanks for writing back so quickly. I love looking at your pictures and seeing Luke enjoying the great outdoors! Joseph is on his 2nd wheelchair and I tell you, him getting to be a "boy" is completely out of the question. Your family looks like it has adapted very well :-)

At 8:18pm on December 3, 2009, Christina said…: Hi Misty,

I just joined the Duchenne Parent Helpline and Facebook page this afternoon. I am so thankful and grateful for parents like you that have energy and strength to inspire me. I'm really looking forward to reading more of your blogs and learning more from your journey. My son, Joseph, just turned 13. We were introduced to the horrible word, Duchenne, 7 years ago. It feels like it was just yesterday, but I'm always amazed how time has flown and how much things have changed since then. My husband and I haven't really reached out much since the diagnosis, but I now feel like it's time to surround ourselves with parents that understand what we feel and go through on a day-to-day basis. I've met a lot of people on Facebook who, just like you are doing so much to work towards getting rid of this disease...it's very inspiring!

Thanks!
Christina

At 3:02pm on June 22, 2009, Jacqueline M McConnell said…: Hi Misty! Thanks for responding. We are all happy and healthy -- camping and enjoying our summer. Hope you and your fam are doing the same. Keep in touch.
Jackie

At 12:09pm on July 14, 2008, alicia said…: misty-
have not heard of Craigs list, but will check it out. Thank you.
alicia

At 7:19pm on July 10, 2008, Tanya Fleming said…: I love your big ATV LOL I want to know how you built it. Was it a truck frame you used or a jeep????

At 2:58pm on July 9, 2008, Char Burke said…: Hi Misty - thanks for the response about the names and Glenallen. You had said there were about 42 boys with DMD in that area. Wow - that's alot. I don't even think we have that many here in Seattle and it's a big city! Your son is a great guy! I hope that heart rhythum thing & weight loss will resolve itself soon. I know a cardiologist down here said that most cardio issues can be controlled with meds.
Keep us posted.
Char

At 2:43am on July 9, 2008, Robyn Hoffman said…: Misty;
I am at my son's right now looking at the PPMD site with him -this is so cool seeing the other individuals with the same, I think it puts a lot of meanimg to not feeling alone in that there are others "out there". Your photos are incredible Curt was amazed at your son on the big machine. He loves to go to see the off road races.

At 2:22am on July 9, 2008, Char Burke said…: Misty,
I have a son who is 51/2 yrs old with DMD. We adopted him from birth. I know birth mom is from Alaska - I think a town called Glenallen. Is that any where near you? The birth grandmother says that they don't have DMD in family history. Dr. Falligan @ Utah Uni. says that one way to know about progression is to know about family members. Just wondering if you would know about the small town of Glenallen and an individual by the name of Tami Jendra or Karen Lukkonnen. Char Burke - email charlatte2@comcast.net