Westley has been diagnosed with Duchenne Muscular Dystrophy.

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I awoke this morning to the sound of Westley through the monitor asking me to help him roll over in bed. As my feet hit the floor so did my Westley’s Warrior bracelet. For those who see me regularly you know this faded orange bracelet is part of my everyday apparel. Whether I am in my jammies or a little black dress this item has only been removed once for a surgery (hospital rules).  I’m not alone though, for 6 years I have loved seeing others wear their Warrior bracelets in honor of Westley.  Our family ordered these bracelets at the very beginning of this journey; Westley’s Warriors – Fighting to Cure Duchenne. We wear them, our family and friends wear them. Even complete strangers who find strength in Westley’s journey wear them.  Over time the color has faded and as I held it in my hands this morning I realized that the words have completely eroded with no sign that there was a message to present to the world and yet that bracelet still means so much to me. That bracelet brought so many closer to us; to Westley. It gave us strength. Bonded us. Made us all stronger and more appreciative of our lives. As the color and the words faded away it only made me love it even more. It was a constant reminder of how amazing my child (and many others) are; how they fight this disease with such dignity, grace and LOTS of laughter. How I can, will and have found a strength inside me to be the best mother I possibly can be to Westley and Wyatt. Seems silly a little piece of silicone could mean so much and evoke so many emotions not just from me but many of Westley’s Warriors.

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I’ve searched the house for a replacement but it seems we have given every bracelet away over the years. I don’t need a bracelet to remind me to be strong anymore but I do have hopes I’ll find an unused one at the bottom of an old purse one day when the journey gets harder and I’ll slip it back on my wrist feeling a little bit stronger knowing there are others out there with their own faded orange bracelets.

We are on the cusp of Westley’s 13th birthday and 6 years into his diagnosis. For those who wear a Warrior band or keep it close by please take a moment to reflect upon it. It’s been a journey to say the least but still this young man amazes me with his positive attitude. He brings me and those he comes in contact with such strength not because he is trying to be a role model but because this is just who he is. He isn’t happy despite his disease; he is just happy. There are so many lessons to be learned from him and I am eager to continue down this road no matter how bumpy we know it will be because he will teach me so much along the way.

Maybe your bracelet isn’t orange; maybe its red or pink or blue or green. The idea is still the same. Find strength in how others chose to fight through the hardships in life. See how they choose to be happy despite all the odds.

God Speed,

Jessica

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Back in town and Fundraising is in Full Swing!

We returned home from Cincinnati Children’s Hospital exhausted! Exhausted really doesn’t even cover how we felt to be honest. After a little time to reflect and process the information we are happy to be home with a healthy checkup. My two main concerns where pulmonology which has remained in the normal range and cardiology. I quote the doc “If you put his heart next to a normal child of his age you wouldn’t be able to tell the difference.” Needless to say when he left the room I shed a few happy tears. Overall we left with lots of great news but there are still a few things we need to work on medically and new equipment to procure to help Westley’s at home.

We didn’t have much down time when we returned because we had our BIG benefit concert to plan!!!! So much work (all good) has gone into making Saturday’s event, MD Palooza 2015 what is sure to be a great time for all. We can’t believe all the donations that have been made to make sure everything is in place! We truly know the best people!

For those who can’t make the event we kindly ask that if you find it in your heart to help us END Duchenne that you make a donation to PPMD at our fundraising site. All proceeds go to the fight against Duchenne. http://www.parentprojectmd.org/site/TR?fr_id=3920&pg=entry

September 19th @ 2150 Anderson Hwy, Powhatan, VA 23139
Gates Open at 4PM
Adults – $10 
Kids under 17 – FREE

Thank you for your continued love and support in our fight to End Duchenne.

Love,
Jessica


Strength is a Choice

I’m not a writer but sometimes writing is the only cure for an aching soul. As Westley’s first appointment the morning of August 24th nears I see the worry in his eyes and feel the growing lump of emotions move their way through my body. Westley does not fully understand the havoc that Duchenne will reap upon his body over time but he does know and feel how stressful 4 days of constant tests and doctors have upon him physically and mentally. It will take him days to recover from these events. We have planned as many “fun” activities as possible and are blessed to be staying with 4 amazing “mothers” to ease our stress. Even still, to watch my baby well with tears at the mention of Cincinnati is heartbreaking. Westley loves an adventure but this is one he cannot seem to find joy in right now.

Most days I can ignore Duchenne altogether. Yes, ignore. It may seem weird but I see his physical limitations, medical equipment and wheelchair as our “normal” and then it’s time to deep dive into “how he is really doing”….Duchenne then becomes something you can’t ignore or brush from your mind. Its impending doom comes over you and lingers like a gray fog that’s weight takes over your every movement and thought. I manage stress with eating right, exercise (its free therapy) and just enjoying life but this one week a year even all those coping mechanisms combined seem to not be enough.

He already lost ambulation this year. Is this the year the Cardiac MRI shows he is declining? Is this the year he starts to loose lung function? How much time do I have with him… a year, 5, 10….the unknown is the most terrifying thing about Duchenne. Until the “all clear” verdict is revealed next week every step forward, every smile and laugh will be made knowing I have to hold strong for Westley and for Wyatt. They must not feel this burden because their little hearts are young and tender.

I live by this quote “We don’t know how strong we are until being strong is the only choice we have”. I thank God every day for making me such a strong person. He clearly had a plan for me. As always your prayers are appreciated and if you could throw a few more Westley’s way next week we would be grateful.

God Speed,

Jessica


END DUCHENNE!!

Seems like forever since I blogged. Sometimes all the other things in life take over and I forget to take time to thank our Warriors for all their love, prayers and support. You all have been there for us over the years and we appreciate each and every one of you. We are off to Cincinnati Children’s Hospital for the last week of August. I’ll be sure to send out an update of the week’s adventures and medical results.

In June I attended a conference in DC held by an organization called Parent Project Muscular Dystrophy. I had heard of them after Westley’s diagnosis but not until the last year have I learned of how they are caring for those affected with Duchenne.

Parent Project Muscular Dystrophy (PPMD) is the largest most comprehensive nonprofit organization in the United States focused on finding a cure for Duchenne muscular dystrophy—their mission is to END Duchenne.

They invest deeply in treatments for this generation of young men affected by Duchenne and in research that will benefit future generations. They advocate in Washington, DC, and have secured hundreds of millions of dollars in funding. They demand optimal care, and they strengthen, unite, and educate the global Duchenne community.

I left the conference amazed at what they are accomplishing and full of hope for Westley’s future.

On September 19th we will be hosting our 3rd MD Palooza benefit concert; all proceeds this year will be donated to PPMD to advance them in their fight to END DUCHENNE!

For those that are local I hope you can make it out to the event.

For those that wish to help us back this organization I ask that you make a tax deductible donation here http://www.parentprojectmd.org/site/TR?fr_id=3920&pg=entry

 Please check out the PPMD website to learn more – www.parentprojectmd.org

 

Jessica & Friends at the END DUCHENNE Rally in DC!

Jessica & Friends at the END DUCHENNE Rally in DC!

 

MD Palooza!!

Save the Date:

September 19th @ 2150 Anderson Hwy, Powhatan, VA 23139

Gates Open at 4PM

Adults – $10 Kids under 17 – FREE

Proceeds will benefit Parent Project Muscular Dystrophy

http://www.parentprojectmd.org/

We have booked 3 of Richmond’s best bands that play 80’s, 90’s, and new party rock!

Red Light Romeo*Age of Excess*Monkey Fist

There will be food and beverages for all to enjoy. Its family friendly folks so bring everyone you know!

 


After a little time away from fundraising Dallas and I would like to ask for your help is supporting Parent Project Muscular Dystrophy. PPMD is charitable organization aided at finding a cure for Duchenne Muscular Dystrophy. They invest deeply in treatments for this generation of young men and in research that will benefit future generations. They advocate in Washington, DC and have secured hundreds of millions of dollars in funding. We can’t stop until we find a cure!

As our way of giving back we will be hosting a benefit concert; MD Palooza 2015! We are excited to have booked 3 amazing local bands to rock the day away. We would love for you to come out but if you aren’t free (or local) please consider making a donation to help us END DUCHENNE!

To make a donation and to learn more about the MD Palooza following this link – http://www.parentprojectmd.org/site/TR?fr_id=3920&pg=entry

As a BONUS if we can raise $5,000 by June 13th I will be bravely dying my hair PURPLE! EEK! It’s a good cause so please help me embrace my inner “Barney”!

Please feel free to review the PPMD Annual Report to see how wisely they invest their contributions – http://www.parentprojectmd.org/site/PageServer?pagename=About_financials

We are also in need of Corporate Sponsers so please contact me if you or anyone you know would like to review of sponsorhsip packet.

Thank you all for your continued support and loving prayers. Life is getting harder for my brave hero but he manages to stay strong with the support from you all.

God Speed,
Jessica


The Tibia Turmoil

Well… it was bound to happen. I am sad to report Westley has his first broken/fractured bone. After 11 inches of snow, a two hour truck ride to Keysville to ride ATVs and sled the demise of our Snow Week was a simple trip to the bathroom. Thursday afternoon as Westley was leaving the restroom his toes curled under him and down he went. I was just a few feet ahead of him and saw the tragic event in slow motion. After catching his breath and a long stint on the floor getting his barrings straight Dallas settled him in on couch. He’s fallen before and twisted his ankle so we treated him with elevation and ice packs. Dallas took the night shift (poor guy didn’t know what he was in for) and by morning we knew this was more than just a few pulled muscles.

We carefully loaded him into the car and headed for our local Ortho on Call. (A big thanks to the Smith family for letting me toss Wyatt into their home as we rolled down their street.) A few hours lately and lots of tears our hearts were broken to hear Westley was broken; a fractured tibia. Breaks like these can be a game changer for boys with DMD. Some never walk again. We are lucky (so to speak) that this was the best case scenario.

Westley is now splinted, enjoying some nice pain meds and watching videos on his iPod. He is not allowed to put ANY weight on his left leg. We return to the specialist on Tuesday to determine whether he will be booted or casted and for how long. We please keep him in your prayers. This is going to be a tough few months of casting, PT and pain just as he started to gain some independence.

Dallas and I feel so blessed to everyone who has reached out to us today. We love you all.

God Speed,

Jessica and Dallas

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Sweet Rachel was so kind to him.

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Autobots Roll Out

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We would like to introduce you to Blue, the newest Autobot in the Groseclose family. Blue joins Westley’s Powerchair to make us one big happy handicap accessible family!!!

Many of you have been praying for us to find a way to get this van. Thanks to your prayers God placed some amazing people in our lives.  Donations from big to small came to us allowing a sizable down payment to be made. We could never have afforded to finance this entire van and these generous donations made this possible. It never ceases to amaze me how generous people are to our entire family. Westley is an amazing guy and this van gives us boundless freedom and adventures.

My heart is filled with joy at how our Warriors take care of my baby is ways that I cannot. God is good. All the time.image


Reminder: Groseclose Open House this Saturday

Groseclose Open House

Please join us in celebrating the holiday season and Westley’s new addition.

So many of you helped make this addition happen and we want to show our thanks.

Where: Groseclose Manor 3880 Howell Road, Powhatan, VA 2313

When: December 6 3pm-6pm

We will have cocktails and hors d’oeuvres.

Come by at 3 and stay all day or just drop in for a quick visit. Hope to see you all soon.

Please bring tidings of good cheer!

RSVP by December 1st @ Jessicagg@Comcast.net


Groseclose Open House

Please join us in celebrating the holiday season and Westley’s new addition.

So many of you helped make this addition happen and we want to show our thanks. 

Where: Groseclose Manor 3880 Howell Road, Powhatan, VA 2313

When: December 6 3pm-6pm

We will have cocktails and hors d’oeuvres.

Come by at 3 and stay all day or just drop in for a quick visit. Hope to see you all soon.

Please bring tidings of good cheer!

RSVP by December 1st @ Jessicagg@Comcast.net


Westley’s Wheels – Go Fund Me Campaign

Dallas and I have been encouraged by a few to start a Go Fund Me campaign for Westley. We don’t feel quite worthy but we are lost for options at this point.

We humbly request your help to provide a wheel chair accessible vehicle for Westley. We have been saving and working hard to make this purchase but with the cost of the addition we have come up short and Westley’s new power wheel chair will be here in about 2 weeks.

Without this van Westley will only be able to attend school in his new power chair. It’s medically necessary that he use this chair going forward to provide better air flow, circulation and posture. We’ve picked out a van (the blue one shown in the photo) and hope to be able to surprise Westley soon.

Please pray on this and if you find it in your heart to help no matter the amount we will be forever grateful.

God Speed,

Dallas and Jessica Groseclose

 

Donations can be made here gofundme.com/g3vpew

 


Warrior Update

The eagle has flown the coop

Well not really; he just moved down the hallway. Westley’s Wing is finally done. I do have some touch up painting to do but we went ahead and moved him in. Dallas and I are so grateful to our builder Rick Smith at RBS Inc. and all the amazing contractors that worked in our home over the last few months. So many companies, family and friends made donations to make this room extra special for an extra special little boy. Westley is loving his new “hotel suite” as we have been calling it. Wyatt is surprisingly happy living alone and can’t wait until we can redo the decor to match his personality. We do plan to have an Open House sometime this holiday season so keep a look out for an invite. There are tons of photos that cover start to finish of the project here – https://www.facebook.com/media/set/?set=a.10204168609553083.1073741834.1161708178&type=1&l=1009fcf750

Hot Wheels

Westley’s new wheelchair should be delivered in about 2 weeks! We were told that Medicaid would deny the stander option of the chair upon submission along with a few other things but God was looking out for us and they are covering every option 100%!!!!! For now he will only be able to use it to go to school but once we get an accessible van the sky’s the limit! He even plans to play Power Soccer through the Sportable organization! (PS I know it seems odd to be so happy about your child getting a wheelchair.)

It’s the Final Countdown

13 days from now we will be in (hopefully) sunny Florida! Westley’s make a Wish A Wish trip is 10/29-11/4 and we can’t wait to have this special family time to make lasting memories. We are very thankful for the Make a Wish organization as they are giving our children (and us) a trip we could never provide for them. We are excited to be staying at Give Kids the World during our trip. This place is just as magical as Disney itself. I’ll be posting a few pictures on Facebook during the trip so keep a lookout for the cutest wish kid around.

 

Lastly I would like to ask that everyone send some special prayers out for Wyatt. Duchenne affects more than just Westley. Dallas and I cope but Wyatt is still an adolescent and can’t quite process the situation as well. His OCD is steadily increasing and we believe he’s developed a panic disorder. We as parents are no strangers to the later but it breaks our hearts to see Wyatt struggle with these issues. Sometimes these conditions get in the way of his true self. Thankfully he has a great group of teachers surrounding him and Dallas and I are working on a plan of action to help our not so little guy find peace.

Hope everyone is enjoying the beauty that is Fall.

God Speed,

Jessica


Moving Forward and Mouse Ears

The summer is nearing its end and so is Westley’s Wing. So much progress has been made over the last few months and there is finally an end in sight. For those that follow us on Facebook you have seen the pictures and the blessings that have come our way. For those who stay away from the insanity that is Facebook here is a recap:

I took it upon myself to reach out via email to as many companies as I could to see if they would be willing to donate some “perks” for Westley’s room. Much to my surprise a few companies stepped forward with some AMAZING gifts! First Home Depot called us in to let Westley pick out a touch less faucet for his bathroom. You may not understand the freedom this will provide him but it is HUGE. Home Depot then made a surprise delivery of 5 gallons of Behr paint and a TOUCHLESS toilet!! A few weeks later Costen Flooring contacted us with the news that they would like to donate the Vinyl tiles for Westley’s bathroom and room. (Dallas and I are laying them ourselves so please pray for us! Eek!) He even got to go into their office and pick them out himself. I must say he has great taste. Throughout this entire process friends and practically strangers have reached out with donations, discounts or called in favors for discounts to building and supply companies. The kind and generous nature does not go unnoticed. I never want to be jaded by the blessings God places in our path. This process has made me even more eager to get Westley settled with a home, wheelchair and van so we can pay it forward to many more families like ours.

I would also like to thank Jason Davis for challenging his friends on Facebook to give up a night out to eat or an overpriced coffee and make a donation to help us furnish Westley’s new room. We have raised enough to purchase a comforter set, lamps, night stand and a few wall decorations. It’s been fun for me to watch Westley pick out the items for his room. I’m impressed at how mature he is choosing to decorate his space. (No Sponge Bob or Call of Duty; Whew!) Thank you Jason for opening your heart and your wallet for our son.

Once the room and the remainder of the house (we needed to take out a few interior walls so West can access the entire home) are put in order we plan to invite everyone to an Open House (just like my parents did during the holidays) to show everyone this amazing new space.

 

Until Then…We’re going to DISNEY WORLD!!!!!

A few of you might remember Westley requesting a Pete Nelson tree house from Make-A-Wish but it seems 6 other boys had the same wish and Pete just couldn’t help them all. After Westley heard his tree house wasn’t going to be build by Pete the idea lost its luster and he requested to go with his 2nd wish. So on October 29th the four of us will board an airplane to Florida for 6 nights and 7 days to enjoy all the Disney adventures Westley can think of. We just can’t wait!!!! This is just one more item Dallas and I couldn’t afford to give our children and we are grateful to Make-A-Wish for the everlasting memories sure to be made.

Upcoming Warrior News

  • Westley’s Wheelchair is officially on order
  • Coach to Cure Football game at Liberty University

Breaking Ground

Duchenne can turn your mind into a web of chaos; thinking about everything you need to do to keep your son healthy and all the things he needs to have a great quality of life. It’s overwhelming how much this disease costs mentally and monetarily.  Dallas and I stress wondering how to pay for the medical bills, the medicine, the wheelchair and the van that needs to be purchased. Another stressor has been our home. Westley has very little independence when inside our home but that is all about to change.

Thanks to my in laws (Papa and GrandMama Patty) we have broken ground on what we have dubbed “Westley’s Wing”! Dallas and I don’t have words to express how much their gift means to us. (I’m tearing up as I type.) To be able to give him a space where he is free is a gift beyond all gifts.

This new addition will allow Westley to enter the house on his own via his wheelchair (which we are working towards). His entrance will take him straight into his room where he can then access the remainder of the home. He will have his own handicap accessible bathroom to include a roll up sink and a zero entry shower. Right now Westley has to ask us to do almost everything for him. He can’t get up from the couch, needs help dressing and toileting along with the simple tasks like turning on the sink. Now when its time to wash his face and brush his teeth he will be able to do these things all on his own. It may seem simple to some but these are huge bits of freedom for him.

We have enjoyed watching every truck, tractor and worker man come and go over the last few weeks. There is so much more to do but its awesome to see freedom being erected before our eyes!

 

We have documented the fun step by step. I hope you’ll take a moment to check out the pictures.

https://www.facebook.com/media/set/?set=a.10204168609553083.1073741834.1161708178&type=1&l=1009fcf750

 

God Speed,

Jessica

 


Home Sweet Home

We have been home from Cincinnati for about a week now and trying to settle into Westley’s new plan of care.

 

Dallas and I are beyond happy with our decision to allow Cincinnati Children’s Hospital to manage his health. They were a well oiled machine and well worth the trip! The facility is top notch, their clinic runs smooth as butter and every person from the Doctors, Med Assts, PT, security to the lunch staff were kind and educated in their specialties. We have never been more impressed with a group of doctors when it comes to Westley’s care.

 

Westley had 4 long days of appointments; being poked and prodded (lots of bruises to prove it) and having to “live” in a hospital room the entire time. BORING! But we managed to laugh the days away and play lots of Uno.

 

By the end of each day we were beat but we made sure to have a little fun in the evenings. Our friend Renee asked her friends who are locals to reach out to us while we were in town. I thought it would be good to have a local contact in case something tragic happened. We actually ended up leaving with two new “Warrior” friends. What amazing women Cindy and Monica turned out to be! They met us in the hotel lobby Monday after we settled into our room. They brought fun things for Westley to give to the hospital staff and made him a super hero cape that seconds as a blanket for those cold hospital rooms. Boy did it come in handy. He even got one to give to another little super hero in the hospital. Tuesday night they treated us to the famous Skyline chili. Yum! Then on Thursday we hit up an authentic German restaurant. There was dancing on benches, accordion music, frauleins and everything! What a blast! Westley LOVED all of it; even the German food.

 

Back to the cape! (Because it deserves its own paragraph) It was our last day in the hospital and Westley still hadn’t found just the right kid to give his extra cape too. As we were leaving for the day Westley saw a little boy looking at the Lego’s in the gift shop window. He scootered over to him, took out the extra cape and said “Hey Buddy, would you like this?” When he turned around the little boy had IV cords, tape and a tracheotomy. He looked like he hadn’t had the best day of his life. He was very shy but told us his name was Colin, thanked Westley and let us grab a picture of the 2 of them. Next is the best part…. As he walked away I saw his mother lean down to hear what he was saying and then she said “Yes, you really are a super hero now!” and at that, he used the cape to “fly” down the hallway. We left with Westley saying “It feels so good to give.” It was hands down THE best moment of the trip.

 

What we learned (medically that is):

 

 

We were doing it all wrong! Ok; maybe not ALL wrong but there is so much to be fixed/tweaked. Some things we were taught in Richmond are not the best options for DMD boys. Here are a few highlights:

  • Westley’s heart and lungs are in PERFECT shape!! These are key to life so the longer we keep them healthy the better.
  • He needs MUCH more physical therapy; as in daily therapy. We were taught lots of new stretches and ways to wear his AFOs (leg braces) that will be more productive in keeping him stretched.
  • His medication dosage is all wrong and some meds he doesn’t need to even be taking. He is also insulin resistant. He’ll need to lose weight over the next 3 months before we can fix the under dosage of steroids. Dallas and I have thought for some time he was under dosed but were told in Richmond he was fine. The entire family has now gone on a Low Glycemic Index diet. The boys seem to be taking to it very well. (All though we all miss our chips with our sandwiches.)
  • Due to the length of time he spends in his scooter these days, its causing his posture and other things to suffer. Posture is key to continued ambulation and to fight scoliosis. We will be working towards transitioning him into a wheelchair full time. This may seem devastating to some but we have been preparing ourselves for when this day came. Now to work with the insurance to see if they will cover any of the $40k it will cost.
  • He will need to have a neuro phyc evaluation to help us know how Westley processes data. This will help us find the ways he learns the best so he can be the best student he can be.

 

Dallas and I left this trip with a feeling of control over a disease we have no control over. We can’t wait for our follow up appointment in November. We thank you for your continued support and prayers.

 

God Speed,

Jessica

 

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Cincinnati or Bust!!!

As some of you know Monday the 12th Dallas and I are packing Westley up and driving to Cincinnati, OH to be seen by some of the best muscular dystrophy specialist in the country. There may not be a cure but they can help us give him a better quality of life. We have been unhappy with the care he is receiving here in Richmond. They have always been kind to us but unfortunately they just aren’t on the leading edge of this disease. All our friends with Duchenne that go to Children’s Hospital in OH have been huge advocates and its now our time to get Westley under their care too.

We have been putting off the trip for years due to the cost but with the help of a fundraiser we are now able to make the weeklong trip. I want to say a HUGE thank you to my friends Natasha Carrington, Kerri Blake, the owners of Godfrey’s and everyone who helped raise money during the H.O.O.P event. Without you this trip would not be possible. I hope you all know what a huge difference you are making in our community.

 

I have seen the disease progress at a more rapid pace this winter. He seems to have leveled out now but he wakes every morning with new aches and pains and needs assistance more and more. It’s heartbreaking what this disease does to him.

 

We will make the 8 hours trip Monday after getting Wyatt off to school. He will be staying home with my mother in law Patty for the week. Westley will then have appointments Tues-Fri with cardiologists, neurologists and pulmonologists. He’ll be getting an MRI, blood work (he’s not happy about this) and a glucose test. He will be checked from head to toe. We hope to come home Friday afternoon with a better plan of care for him.

 

Missing school should be exciting but Westley knows what long days waiting for appointments and doctors means; BOREDOM. We do get a little break on Thursday so we plan to take him to the zoo for a little fun.

 

I know these are going to be long exhausting days for Westley and Wyatt will miss us like crazy (even though I know Grandmama is going to spoil him rotten).

 

Please keep us in your prayers as we travel through this new adventure.

God Speed,

Jessica and Dallas


The Good, The Bad and The Better

The Good…
The Muscle Walk which was cancelled due to inclement weather is now rescheduled for May 4th at the University of Richmond Weinstein Gym! Event is from 1-4  at 28 West Hampton Way, UofR, VA 23173. Donations are still welcome – http://www2.mda.org/site/TR/Walk/22-379-RichmondDistrict?pg=team&fr_id=8003&team_id=22103
Both boys made A/B Honor!
Westley will be meeting with Make a Wish to have a wish granted. He doesn’t want me to spill the beans just yet because he knows it’s a lofty request. I truly think it could actually happen though. His backup plan is a trip to Disney. Either way it’s such a blessing!
We are putting together an Inclusive Racing team; Westley will be completing his first half marathon exactly a year after I did my first one. He is WAY ahead of me on this running thing.
The Bad…
I hate to say it out load (because that makes it more real) but Westley is declining faster than we have ever seen him. Just walking the 20 feet to the bathroom is a chore. He is having a hard time standing from the couch or even to brush his teeth and hair before school. Westley has been suffering from a constant headache for the last two months; he even spent a day in the ER because it had become unbearable. We saw every doctor we could think of, got a CT scan (all clear!) and finally ended with a few sleep studies. Westley has been using a Cpap machine for a few weeks now and we end this bad report with a bit of good; he has been headache free for a week now!!!!
The Better…
We will taking Westley to Cincinnati, OH in either May or June to have him evaluated and cared for by one of the best Muscular Dystrophy clinics in the country. We hear amazing things from the DMD world about these doctors. No, there is no cure they can offer him but if they can make the quality of his life better than it will be well worth the trip. The appointments are 3 straight days so please pray our little guy holds up for all the poking and prodding that will come his way. (I plan to bribe with ice cream.)
Along with Westley’s health Dallas and I constantly worry about how we are going to properly care for him. A vehicle and a home that is not a prison is a continuous stressor. We are excited to have just met with the man who originally build our home in 2000 to start plans for an addition. This wing will be Westley’s “apartment” so to speak; housing a fully accessible room and bathroom. We hope to break ground in June. We are cutting costs by doing some of the inside finishing work ourselves but we are overjoyed that Westley will have a place to call his own with no limitations.
GOD IS GOOD ALL THE TIME!
God Speed,
Jessica and Dallas

Rain or Shine – We are Shooting Down DMD!

MDA Muscle Walk is today!

Flying Squirrels Stadium; 1pm – 4pm

We will arrive around 1 and hope to have our team gathered by 1:30 so we can get the waivers signed and turned in by 2. Everyone who attends will get a 2014 MDA Muscle Walk t-shirt!

Admission is free but bring cash for the concessions, raffles and the memory balloon release.

Remember we are SHOOTING DOWN DMD so I want to see lots of camo! Get those kiddies decked out in full hunting gear; its going to make for a great photo op!

To make a secure donation please go to – http://www2.mda.org/site/TR/Walk/22-379-RichmondDistrict?team_id=22103&pg=team&fr_id=8003

Listed below are a few of the exciting things we have taking place at the Muscle Walk!…

• Mascot Races/Competitions – Nutzy, VCU Ram, Little Caesars, Sweet Frog’s Scoop and Cookie, Chili’s Chili Pepper, Richmond Ambulance ParaBear • Gary Wayne Band – live music on concourse • Amy Lacey as emcee – ABC WRIC Anchor • Jason Paige – DJ/Emcee • Balloon Animals • Arts & Crafts • Clowns • Facepainting • Carnival Games • Robot demonstrations • Fire truck/ambulance tours • Photobooth


Quilt Raffle

And the winner is…….LISA HUDSON!!!

I want to thank everyone who purchased tickets to win the beautiful quilt my parents made and donated. We raised an amazing $775!!! If you didn’t win there will be 2 quilts next year! My parents have their work cut out for them to top this year’s quilt.

To see Westley drawl the winner live go to – https://www.facebook.com/photo.php?v=10203350629144084&l=6784601674186564411

MDA Muscle Walk is THIS Sunday!

Flying Squirrels Stadium; 1pm – 4pm

Hopefully Old Man Winter will be gone by then and we can celebrate our efforts to Shoot Down DMD in the sunshine. Wear your camo; green or pink to show team support!

To make a secure donation please go to – http://www2.mda.org/site/TR/Walk/22-379-RichmondDistrict?team_id=22103&pg=team&fr_id=8003

Listed below are a few of the exciting things we have taking place at the Muscle Walk!…

• Mascot Races/Competitions – Nutzy, VCU Ram, Little Caesars, Sweet Frog’s Scoop and Cookie, Chili’s Chili Pepper, Richmond Ambulance ParaBear
• Gary Wayne Band – live music on concourse
• Amy Lacey as emcee – ABC WRIC Anchor
• Jason Paige – DJ/Emcee
• Balloon Animals
• Arts & Crafts
• Clowns
• Facepainting
• Carnival Games
• Robot demonstrations
• Fire truck/ambulance tours
• Photobooth


Warrior Wear – On Sale Now

It’s time for all our Warriors to put on their ARMOR!!!

We have created t-shirts for those who would like to support Westley’s fight to cure Duchenne Muscular Dystrophy. All of the net proceeds will be donated to the MDA Muscle Walk Campaign. We hope you will join us in suiting up for the fight against Muscular Dystrophy.

I am so excited about this year’s tshirts! I took Westley’s idea and turned them into something he is very proud of. I hope you will love them too!

We are making ONE order so don’t miss out!

Order Deadline: EOD Friday March 14th

To place your order go to: http://westleyswarriors.twistededgepromotions.com/default.cfm?

Ordering Information:
◾T-shirts will be shipped to me; not directly to you as stated on the website. I will make sure you all receive your armor.
◾Shipping Date on site is incorrect. Once we receive multiple orders I will calculate and make one large order to the printer. So place your orders!!!!

Payment Options:
◾Cash/Check (preferred) – Mailed to Jessica Groseclose, 3880 Howell Road, Powhatan, VA 23139
◾PayPal – https://www.paypal.com/ to jessicagg@comcast.net ◾First place order at http://westleyswarriors.twistededgepromotions.com/default.cfm?
◾Next access PayPal, Select Send Money Now, Select “buying something”, following the prompts to complete payment transfer

◾Shipping – our website doesn’t allow us to calculate shipping so we are using the “honor system”. If you need me to mail your items please add your best guest for USPS shipping to your check or Paypal payment

 

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We hope to see you all wearing these shirts very soon,

Dallas, Jessica, Westley and Wyatt


Quilt Raffel

Westley’s Warriors Presents a

QUILT RAFFEL

This beautiful quilt was designed and created by Westley Groseclose’s Grandma and Grampa Texas. Their hope and prayer is to help raise money to find a cure for Duchenne Muscular Dystrophy. 100% of the proceeds will go to Duchenne research through the MDA.

1 Ticket = $5

5 Tickets = $20

Quilt fits a King Size Bed

 Colors – Black, Red, Gray & White

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The boys say its too pretty to raffel!

 

This will be a “virtual” raffle; meaning no paper tickets will be handed out.

Names and Ticket #(s) will placed in a spreadsheet. Your raffle #(s) will be emailed to you upon payment.

Payment can be made via check, cash, or PayPal

Cash/Check Mailed to Jessica Groseclose, 3880 Howell Road, Powhatan, VA 23139

PayPal – https://www.paypal.com/ to jessicagg@comcast.net; Select Send Money Now, Select “buying something”, following the prompts to complete payment transfer

 

Duchenne is a muscle wasting disease effecting 1 out of 3,600 boys. As the muscle tissue wastes away these boys lose the ability to climb stairs and walk. Due to progressive deterioration of muscle, loss of movement occurs, eventually leading to paralysis.

These boys need our help! (and you need to stay warm under this quilt)

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Quilter Signature – She used last years Warrior shirt to make this

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New Year New Theme

I hope you all had a wonderful holiday season and have started the New Year off with a BANG! We had a nice Christmas surrounded with family, friends and lots of laughs.

 

We are starting our New Year SHOOTING DOWN DMD and we hope that you will join our hunt to find a cure.

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There are lots of exciting ways you can get involved!

We will also be selling shirts – more to come on that!

AND

My parents have made and donated a beautiful quilt that will be raffled off (as soon as I figure out how to do a virtual raffle)

Remember 100% of your donations go to DMD research. These boys are running out of time and need a cure now! It’s Westley’s passion to raise money for the Muscle Walk because he wants to make a difference in the DMD community. For the past 3 years our amazing Warriors have helped us raise over 30k!!!!! We will continue our fight this year and thank you all for your prayers and donations.

God Speed,

The Groseclose Family


Reunited and it Feels so Good

Saturday presented to be another amazing adventure for our family. Liberty University extended an offer to attend a game WITH pregame sideline passes! We arrived and were greeted with open arms by Coach Gill’s wife Gayle; who organized our entire day.  God Bless Her! We were whisked up to a fancy buffet lunch and back down to the side lines where a few of the players were already warming up. We were amazed at how many of the young men came over to greet Westley with a fist bump and to shake our hands. Such amazing guys!

Coach Gill emerged onto the field holding what we thought was just an ordinary football. When we were unable to make the actual Coach to Cure football game in September the team promised to play in Westley’s honor. Liberty ended up winning over Kentucky Wesleyan 73-7! They saved a game ball and had it personalized just for Westley. He was pretty happy as Coach Gill presented it to him and explained what it was. Dallas and I were in awe. Not only were we being treated like royalty but these men; this team had thought ahead and created a football like no other for our son. The thought and love that went into that ball over joys me. Westley quickly explained to Wyatt that “THIS ball is not for throwing” and we would placed on the trophy shelf with Wyatt’s baseball trophies.

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We all enjoyed watching the Flames beat VMI 17-7 (while the boys ate their weight in cookies and brownies). It happened to be Military Appreciate Day. The half time show was grand and made us all proud to be Americans and thankful for all the men and women who have fought and continue to fight for our freedom.

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When the game ended we headed down to the field to congratulate the team. The boys thoroughly enjoyed racing up and down the field. I mean; how many kids get to do that in their lifetime! At one point a man flagged down Westley and asked for a ride on his scooter. Westley didn’t know it but it happened to be Jim Kelly; former QB for the Buffalo Bills! (and no; he refused him the ride) lol

The ride home was quiet with the occasional statement from Dallas or I about how blessed we are. Westley may suffer from DMD but God had granted us so many opportunities to put on a smile on Westley’s face and to show the world DMD will not drag us down.

At bedtime Westley snuggled that game ball like a fluffy teddy bear and fell asleep with a grin on his face. God is Good.

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Let’s RUN down DMD

HELP ME RUN DOWN DMD!!!

I’ve committed to running the November 16th Richmond Half Marathon!!!

Westley may never be able to run but I can use his strength and spirit to accomplishment something I never thought possible.

For those who know me; I’m not a runner or even athletic for that matter but after Westley’s diagnosis I needed to find something to focus on other than the negatives of his disease. Oddly I chose running.  I never ran a mile in my life; not even in high school PE!  I was even asked after a week of being on the B Volleyball team if I would rather be a manager. And yes; I happily took the job. So far a 10k has been my longest race but with my friends and family’s support I have been training for this 13.1 for the last few months.

I’m scared but I am ready to RUN down DMD!

Please think about donating to help us find a cure for DMD.

$13 – for every mile I put on the asphalt November 16th

$20 – for the number of tears I will shed after defeating the 13.1 🙂

http://www2.mda.org/site/TR/Walk/22-379-RichmondDistrict?px=1004571&pg=personal&fr_id=8003

 

God Speed,

Jessica

 


Save the Date – Muscle Walk 2014!!!

If you have been involved in previous Muscle Walks you know what an amazing day it is and we are so excited to do it all over again in 2014! We hope you all will join us whether in body or in spirit to fight back against Muscular Dystrophy.

A few of you have requested to make your donations in 2013 for tax purposes so I went ahead and set up the Westley’s Warriors Team page.

For every dollar we raise, 100% goes directly to support research for Duchenne Muscular Dystrophy!

Westley looks forward to this event all year! It’s a way for him to feel as though he is doing something to find a cure for DMD. Our Warriors helped us raise over 9k last year!!! Please help us fight against DMD by making a donation and joining our team to raise funds.

I truly believe there will be a cure within Westley’s lifetime!

To make a secure donation go tohttp://www2.mda.org/site/TR/Walk/22-379-RichmondDistrict?team_id=22103&pg=team&fr_id=8003

To join our team and help raise funds for a cure go to – https://secure2.convio.net/mda/site/TRR/Walk/22-379-RichmondDistrict/653215942?pg=ptype&fr_id=8003

 

God Speed,

Dallas, Jessica, Westley and Wyatt

 

Muscle Walk 2014

March 30, 2014

Flying Squirrels Stadium