Westley has been diagnosed with Duchenne Muscular Dystrophy.

Archive for March, 2011

Prayer Request

I need ALL my Warriors praying today. PLEASE! Rebecca is a 13 year we have recently met through the MDA. She has Friedreich’s Ataxia and went in Tuesday for a 10 hour spinal fusion surgery. As of this morning she has been unresponsive for over 32 hours. Doctors have stated she is in a coma state; the EGG showed no signs of brain damage but there was some irregular action and she is not responding to medication to help wake her up.

Please pray for Becca to wake up and for strength and faith to hold fast for her family.

More Info on Rebecca: http://www.rebeccasreality.org/


Hot Wheels

Westley's scooter included a BOW and SPONGE BOB Balloon!!!

Westley's scooter included a BOW and SPONGE BOB Balloon!!!

If you read my last post you will know I mentioned that Westley fell in love with a red scooter and was very upset when he didn’t win it in the raffle. He does NOT need this on a daily basis but things like the Muscle Walk wear him out. He came home exhausted and achy because he over did it that day. Dallas and I discussed looking into getting him one for long walks, amusement parks and shopping trips.

Since the MedInc ladies were so great to us at the walk he called them up first on what to do to get the ball rolling. Dallas started making all the calls per their direction. After a handful of calls we were told by the Children’s Hospital that we HAD to use their preferred provider. This came as a huge shock to us and MedInc. The owner of MedInc decided to save us all the hassle and donated one to Westley. FREE! No insurance; no cost to us at all!!!

The kindness of strangers is overwhelming!! We are forever grateful to Shane, Marta and Jenna. They have just made one little boy VERY happy!

Jenna, Marta, Wyatt and Westley
Marta, Wyatt, Shane, Jenna and Westley
Wyatt hitches a ride


A Day to Remember

Sunday March 13th 2011 was the Richmond MDA Muscle Walk and God could not have granted us a more beautiful day. The entire day was a blessing for so many families. There were over 800 people in attendance. Dallas and I counted over 70 Warriors at the Muscle Walk; making us one of the largest teams to turn up that day. We are truly overwhelmed by the outpouring of love and support we have in this fight. We could not get through this without it. Everyone who supported us by praying, raising funds, donating or purchasing t-shirts should feel proud. We all worked together to achieve an amazing feat.  Our team raised a phenomenal $14,940.00; putting us in 3rd place. (Not that I’m counting but it sure did feel good to be so successful my first time in the fundraising arena.) 

The event raised $157,856.00; more than double the total from last year. Understandably I was not the only person holding back tears when that dollar amount was announced. This money is going to help fund research to cure our friends and family. This event gives us HOPE for a cure. Thank you to everyone who created this “happy moment” in so many hearts.

Westley really enjoyed himself. He played with friends, got tattoos, danced with the cheerleaders and fell in love with a power scooter. He managed to walk 3 of the 4 laps but I’m pretty sure Dallas and George’s shoulders are hurting today from carrying him part of the time. I know a lot of folks would agree with me when I say the most touching moment of the day was to read the back of Wyatt’s shirt. We were given an “honor tag” that states “I WALK FOR: ____”. Most were putting Westley’s Warriors, Westley, etc.  I came up to him filling in the blank with a blue marker and asking a woman how to spell something. I looked down and in his handwriting it stated “I walk for: my brother.”  I think everyone who saw that sign got choked up; including grown men. Westley is one amazing kid but he also has one amazing little brother.

Thank you again to each and every one of you for making this event so meaningful to our family.

God Speed,

Jessica and Dallas

See more pictures here: http://www.facebook.com/album.php?aid=2112586&id=1161708178&l=b85aa9d83b

 

 
 
 

 

 
 
 

 

 


Muscle Walk Arrival 12:30 (dont forget time change tonight)

Date: Sunday, March 13, 2011   Arrival: 12:30

Place: University of Richmond – Weinstein Gym (directions below)

If you have one, wear your Warrior shirt! If not white, blue or orange will be great!!!!!

We are asking that all WARRIORS arrive at 12:30 just outside the Weinstein Gym even though registration starts at 1pm. I need to collect information from all those attending and signatures on a waiver form for all those walking (legalese I’m afraid; but not a big deal). The weather should be great so a little time to socialize and mingle will be time well spent while I am wrangling all the info and checking us in. Call me if you have questions or get lost @869-8083.

There will be a magician, tattoo station, team sign making (make sure the kiddies come with their creative hats on), cheer leaders, the Flying Squirrels Mascot and more….

We appreciate all your support and we can’t wait to see you all there!

Directions to Muscle Walk ~ University of Richmond Weinstein Gym

From Interstate 64 West (Coming from points East or I-95):

  • Take Exit 183 A (Glenside Drive South)
  • Continue to follow Glenside Drive (will turn into Horsepen Road but will stay straight)
  • Turn Left on Three Chopt Road at the light– pass The Village Shopping center on your left and road will narrow to a two lane road – follow signs to University of RIchmond
  • Turn Right onto Boatwright Road (please be careful, this road is VERY curvy!)
  • You will see the main entrance to University of Richmond & Football stadium (on left)
  • Turn Left at the first parking lot entrance after the stadium (sign will be for Robbins Center & Weinstein Center)
  • Follow parking lot around until you see entrance for Weinstein Center (big white columned entrance)

 

From Interstate 64 East (Coming from points West, Charlottesville, etc.):

  • Take Exit 183 towards Glenside Drive (250 West)
  • Turn right at stop light at the end of the exit ramp onto Glenside Drive South
  • Follow directions above from Glenside Drive

 

From Huguenot Bridge:

  • Come across Huguenot Bridge and turn Left onto River Road
  • Turn Right onto College Road
  • Turn Right into parking lot for Weinstein Center (just past lake)

 

From Chippenham (Rt. 150):

  • Go North on Rt. 150 towards Richmond
  • Pass over Willey Bridge and turn Right at first stop light onto River Road
  • Turn Left at immediate stoplight onto River Road
  • Turn Left onto College Road
  • Turn Right into parking lot for Weinstein Center (just past lake)

At a quick tally I think we will have at least 50 Warriors!!!! Amazing!!!

Date: Sunday, March 13, 2011   Arrival: 12:30

Place: University of Richmond – Weinstein Gym (directions below)

If you have one, wear your Warrior shirt! If not white, blue or orange will be great!!!!!

 

We are asking that all WARRIORS arrive at 12:30 just outside the Weinstein Gym even though registration starts at 1pm. I need to collect information from all those attending and signatures on a waiver form for all those walking (legalese I’m afraid; but not a big deal). The weather should be great so a little time to socialize and mingle will be time well spent while I am wrangling all the info and checking us in. Call me if you have questions or get lost @869-8083.

There will be a magician, tattoo station, team sign making (make sure the kiddies come with their creative hats on), cheer leaders, the Flying Squirrels Mascot and more….

We appreciate all your support and we can’t wait to see you all there!

Directions to Muscle Walk ~ University of Richmond Weinstein Gym

From Interstate 64 West (Coming from points East or I-95):

  • Take Exit 183 A (Glenside Drive South)
  • Continue to follow Glenside Drive (will turn into Horsepen Road but will stay straight)
  • Turn Left on Three Chopt Road at the light– pass The Village Shopping center on your left and road will narrow to a two lane road – follow signs to University of RIchmond
  • Turn Right onto Boatwright Road (please be careful, this road is VERY curvy!)
  • You will see the main entrance to University of Richmond & Football stadium (on left)
  • Turn Left at the first parking lot entrance after the stadium (sign will be for Robbins Center & Weinstein Center)
  • Follow parking lot around until you see entrance for Weinstein Center (big white columned entrance)

 

From Interstate 64 East (Coming from points West, Charlottesville, etc.):

  • Take Exit 183 towards Glenside Drive (250 West)
  • Turn right at stop light at the end of the exit ramp onto Glenside Drive South
  • Follow directions above from Glenside Drive

 

From Huguenot Bridge:

  • Come across Huguenot Bridge and turn Left onto River Road
  • Turn Right onto College Road
  • Turn Right into parking lot for Weinstein Center (just past lake)

 

From Chippenham (Rt. 150):

  • Go North on Rt. 150 towards Richmond
  • Pass over Willey Bridge and turn Right at first stop light onto River Road
  • Turn Left at immediate stoplight onto River Road
  • Turn Left onto College Road
  • Turn Right into parking lot for Weinstein Center (just past lake)

Time is Ticking…

There are 3 days left until the Richmond MDA Muscle Walk and we cant wait!!!!
 
By now you all know we are walking for Westley and all those like him. I truly am passionate about this fundraising event in particular because all the dollars our Warriors bring in goes directly to research Duchenne Muscular Dystrophy. As a Mother I am heartbroken that there is little I can do to help Westley but this fundraiser is HOPE for him, our family and so many others.
 
For those of you who have already helped us reach an amazing $11,791 we thank you from the bottom of our hearts. I NEVER dreamed we could raise that much. YOU ALL ARE ROCK STARS IN OUR BOOK!
 
If you are willing to donate even the smallest amount please click on the link below. Also; it would be great if you would forward this post to all your friends, family and co-workers one last time. Please let me know if you will be submitting a “matching gift” through your employer.
 
God has placed the most amazing people in our path and we are grateful for each of you.
 
God Speed,
Jessica

Westley and his dog Uli

 

Kroger Update

Westley’s face (along with a few others) is going to be on all of the Kroger change canisters in the Kroger Mid-Atlantic! He was so excited!!! Big Thanks to Mrs. Liz for making this happen!!!

Click here to see the photos – Coin Box_MDA_5x5


Medical Update

After a 3 hour MDA clinic visit at the Children’s Hospital on Wednesday Westley and I were both exhausted. We love everyone there but it’s a lot of hurry up and wait which doesn’t sit well with a 7 year old. We managed to make our own fun by finishing home work, doing math flashcards and the best of all I commentated Westley’s WWF match between a herd of dinosaurs.(In case you are wondering T-Rex reigns supreme.) We could not stop giggling.

 Highlights of the visit (minus the dinosaurs):

  • We don’t have to return for 6 months!
  • Westley has gained 20lbs since he began the steroids in Nov 2010. Not a huge concern at this point because he is very active and happily eats his fruits and veggies.
  • We are seeing no additional physical benefit from the steroids (i.e. taking the stairs easier, limited falling). He will however remain on his current dosage as its thought to keep the heart and lungs strong.
  • He has been complaining of “flurries” in his eyes and this is due to the increased fluid levels from the prednisone. We were advised to take him to an Ophthalmologist as a precaution. We are in luck because my best friend’s husband happens to be an Ophthalmologist so we will be making an appointment in the next couple of weeks to go see him.
  • We have been having some difficulty getting Westley to walk in his AFOs (braces). Wearing them with shoes makes him walk heal/toe and his body only knows toe/heal. He really has to retrain his brain and body to walk in them and it’s not proving to be an easy task. The proof is in the pudding as they say and the physical therapist was concerned on how tight his muscles were. She said to keep working on the AFOs and gave us some additional stretches we could do with him to assist. If at our next appointment he has gotten worse we will talk about casting. This is not surgery; just stretching the foot and placing a cast on it to allow the Achilles tendon to be permanently stretched for a week at a time. We will do everything we can so they don’t have to cast him.

I think the biggest shock of the day came when we had settled down for the evening on the coach. Westley was having a hard time with wearing his AFOs and was showing some frustration with how annoying they are to wear. He finally burst into tears and said “I hope they find a cure.” and covered his face with a pillow as he continued to cry. Dallas and I immediately were at his side telling him he had every right to be frustrated and how proud we were of him for expressing it the way he did. After a few minutes of tears we had a chat about how we know this isn’t easy for him, how amazing he has been through it, and how impressed we are with him. We talked about not having to always be ok with MD and that we can take a few minutes to cry and then we try to remember all the blessings we have been given in life. Within moments he had moved past it and we had a nice evening together.

What is amazing to me is that at 7 he said “I hope they find a cure” What he could have said is “I hate muscular dystrophy!”, “Why am I like this?”, “This isn’t fair!” Or anything negative but he chose to express his feeling in a way so beyond his years.

I know the day may come when those negative comments may slip from his mouth but for now we are truly blessed at how amazing Westley is and his strength through this journey.


Kroger – MDA Campaign

For those of you who live in Central Virginia please support the MDA by shopping your local Kroger. There is a Shamrock campaign which is a $1 per Shamrock and a change canister at each register to donate your loose change.

If you happen to shop the Kroger off of 288/Midlothian Turnpike in Virginia you will see Westley’s cute face on each of the canisters. This store has “adopted” Westley in their campaign to help raise awareness and funds.

We can’t wait to go there this weekend to say thank you and see all the donations folks have made for the MDA.