November Happenings

Since the month of November was "Menkes Awareness Month," Kent and Natalie planned some fantastic events to let others know about the disease called "Menkes," as well as to draw attention to the very special little son they have with this disease:  Cannon.

 Cannon will be three in March, yet he still weighs only about 18 pounds.  However, this little guy has done more in his three short years here on earth to emphasize the power of prayer and the love one feels for someone so special.  There is not a home that George and I go in throughout our family who doesn't pray for little Cannon daily.  We love this little guy beyond words!  

The first even planned was the Amazing Boy Race.

To understand a little more about the disease, I have included the article written in the Sunnyside newspaper which talks about Cannon and Menkes and the Amazing Boy Race.

'Amazing race' in Sunnyside creates awareness of Menkes disease

Photo by John Fannin/Daily Sun News

Gray skies and rain didn't dampen the spirits of 30 or so folks who turned out for an amazing race in Sunnyside last Saturday to bring attention to Menkes disease.

John Fannin

November 06, 2012

More than 30 people divided among eight teams didn't let gray skies bother them last Saturday as they rallied for what they called an "amazing race" here in Sunnyside.
It was a good, family fun event for a good cause - raising awareness of Menkes disease, a fatal illness that affects about 1-in-250,000 births.
One of those impacted by the disease is the Copeland family of Sunnyside. Natalie and Kent Copeland's son, Cannon, is two-and-a-half years old and has the illness.
According to the non-profit Menkes Foundation, the rare illness is one in which the intestines are unable to absorb copper, depriving the brain and other tissues, such as muscles, of that essential mineral.
November is Menkes awareness month, and to that end the Copelands along with family and friends met Saturday afternoon at Community Dental in Sunnyside for the race to bring attention to the disease.

Altogether, the group made 34 stops in and around Sunnyside to pick up clues for the next portion of the contest. Though parents and kids were competitive in trying to get to each stop first, they were all in for Cannon and his rare disease.

 

 

 

 

Reagran Lara-Rood is a family friend of the Copelands and helped organize Saturday's race. She said the hope was that getting out and about in the community would generate questions and create curiosity about the disease. 

 

 

Though there is no known cure for Menkes, the foundation's website on-line at www.themenkesfoundation.org notes positive results can occur the earlier a child is diagnosed with the disease and treated for copper replacement.
Thanking the 30 or so folks assembled on behalf of her son, Natalie Copeland in an at-times emotional appeal called on the group to be thankful, as well.
"Let's be thankful for our bodies and the ability to run and move, because Cannon isn't able," she said.

 

 Amazing group of people who showed up for the Amazing Boy Race.

 The final stop was at the church where the awards were given.

 Guess who won First Place?  Kent, Natalie, Ethan, and Ella--those competitive Copelands.  They had extra-incentive to work hard in the race! 

 As per usual, Natalie puts all of her talents into everything she does--it is always first rate!

Natalie's parents were there to help out which they are always so good to do.

 What a wonderful event for our little Cannon Boy!  If only George and I could have been there, too.  Thanks, Natalie, for taking so many pictures.  I know it drove Ethan and Kent crazy because they didn't want to stop for a minute to take pictures, but it surely made all of us feel a part of the event!

Cannon Boy Run

Another event for Menkes Awareness and little Cannon was planned by Natalie's brother, Greg, in Logan.  Again, just an 
outstanding event!  Greg wrote an article for the Logan paper, which I'm including that tells about the event and Menkes.

Cannon Boy Run – A Rally of Support for Our Menkes Baby.
November 22, 2012 Thanksgiving Morning – Recap 
 
On a crisp and frosty Thanksgiving morning, friends and family of Cannon Rigby Copeland gathered in Wellsville Utah to participate in the first Cannon Boy Run. Designed as a fun run for all ages, the Cannon Boy Run is a rally of support for Cannon and the families that are affected by Menkes syndrome. 


Kevin and Angie, Lauren, Hannah, and Kade participated in this wonderful event representing the Copeland Family.  I only wish more of us could have been there!  (Koda came along for the ride!)

Two and a half years ago, Cannon Rigby came to the Copeland family. Their third child and second son.
 

 A few months into Cannon’s life experience here on Earth, things seemed to be amiss, for he was not developing in the preconceived manner for a child of his age. 



After months of questions, research and lots of tests, (which initially provided no definitive answers) it was confirmed that Cannon did have the rare genetic disease of Menkes. 

Menkes is commonly missed by the medical community because the signs and symptoms at birth and in early infancy are subtle and often confused with other diseases. Menkes disease is a fatal illness in which the intestines are unable to absorb copper, depriving the brain and other tissues of this essential mineral.
Early treatment of symptoms is crucial for these children to maintain a sense of normalcy during their infancy and early childhood.
To date there is no cure for Menkes syndrome other than treating the symptoms with palliative care.
The prognosis for individuals with Menkes is poor; life expectance is generally less than the first decade of life. 
 Cannon is a great spirit and has brought many life lessons with him. It was that spirit that was the focus of the Cannon Boy Run. The participants gathered to celebrate Cannon’s spirit and the spirit of life. 

About 50 kids and adults showed up to show their support. The day started with everyone writing Cannon a ‘well wish’ card and tying it to a balloon. Then the Presentation of the Pennies.
Since Menkes is a copper deficiency, each participate brought one ‘copper’ penny for each year old they were. With pennies in hand, all

participants dropped their penny donations in the jar. All donated pennies went directly to the Menkes Foundation Organization, which supported the event with prizes and giveaways, plus awareness literature. 
 

 
 Copper pennies for the copper-deficiency disease--Menkes

  



The run consisted of a fun course of 8 events, done in teams. The teams consisted of a young run, (under 12) and an adult runner. The 8 events were simply and fun, somer-salts, football passed, archery, drawing, hula hooping, cartwheels and piggyback rides. 













 
It looks like Kent and Natalie paired up with some of the nieces and nephews.


All teams ran the course at least twice, the winner would advance until a winning team was determined. The winning team took home the Cannon Boy Run Cup. 



 Guess who won this race?  Kevin and Hannah--First Place

 Angie and Lauren took 3rd Place.
When we talked to them, they all just couldn't stop telling us how fun this all was!
 
Once the cups were presented to the winners, everyone took the well wish card and balloon that it was attached to, and gathered in a large circle. Together the group, holding their balloons and well wishes, gave the Cannon Boy Run cheer as they ran into the middle of the circle and let their balloons float up into the heavens.
There were lots of smiles, tired runners, and a few tears. But having the opportunity to try and demonstrate their love and support for a strong and beautiful boy and his family was the feeling everyone left with in their heart. 

An extra-ordinary little guy with an extra-ordinary family!

Garrett's Birthday.

It doesn't seem possible that these two boys were born ten years ago!  I love this picture of the two cousins:  Garrett and Ethan, born just 12 days apart.  Don't they just look like they have so many ideas going on in those heads!  And they have certainly proved that in all their activities they have undertaken in these short ten years!

George and I had a great time attending Garrett's 10-year-old family birthday party at his home.  Garrett is a very talented young man who writes like a seasoned author and can draw anything he sees free-hand.   

 Not knowing for sure what Garrett wanted for his birthday, we gave him his $10 for his 10-year-birthday, plus we gave him a gift card for Walmart to get what he wanted.  I have NEVER seen a kid more excited about a gift!  He called out, "A Credit Card to get Anything I Want!!!"  HE WAS SO EXCITED!  Then Isaac said, "For my birthday, will you give me a credit card, too?"  It was so cute.  And Isaac has reminded me so many times since that the credit card is what he wants--his birthday isn't until March, but he wants to make sure I remember!  Who would have known--here I have taken so much time trying to find the perfect gift, and all I needed to do was get a "credit card"!

 Garrett gave Grandpa the biggest "thank you" hug!

 Amy is so orgranized and already has her tree up.  All Isaac wants for Christmas is his two front teeth!

 This gift from his parents made Garrett pretty happy, too.  He hardly wanted to do anything else for his party but go in the other room and start putting it together!

 Garrett and his birthday "cupcake."  Amy likes to get cupcakes because they don't end up wasting so much of the cake.

 If you can't tell, this was the end of a school day--pretty hammered, right?!

What a fun birthday party, Garrett!  Thanks for inviting Grandpa George and me!

Another Eagle Scout!

Grandpa and I are so proud to announce the fourth Eagle Scout in the Copeland Family:

Parker, son of John and Alison

I wanted to put the description of the project in his mother's words because it tells so much better about this unique Eagle Project that I could never do justice to in explaining:

Several months ago, Parker visited a Chinese retirement home (Cherish Yearn) fairly close to our home, and asked some of their residents if they would be interested in participating in his BSA Eagle project.  The particular residents were enrolled in an English class at their retirement center, and most of their spoken/written English was already quite good.  Parker invited each of them to write personal stories that had impacted their lives, and also urged them to attach any pictures that they would like included in their stories.  He told them he would return in a couple weeks with many other boy scouts to interview them and read their stories, help them edit their stories, and then finally Parker would compile all the stories into a memory book for each of the participants to keep.  The residents were thrilled and excited to say the least, as many of them had little or no written personal histories. 

One week later, Parker received a call from the leader of the English class telling him that unfortunately the class had changed their minds, and none of the participants were willing to take place in the project.  Parker was devastated, and asked why the sudden change??  The leader was quick to tell Parker that each and every one of the participants had lived through the dark years of China's revolution, and each of them still feared having their lives taken from them by expressing any feelings of hatred and animosity towards their government.  They were incredibly scared that anything they would write in their personal stories could be used against them.

The next day, Parker made another personal visit to Cherish Yearn, and the English class members.  He talked with the class, and expressed his understanding of their fear and concern, and then pleaded to them for their trust in him for this project.  (I have to admit I was very doubtful, but by the time we left, all participants were back on board,  and even more excited to be part of Parker's project.) 

The scheduled day of the visit to Cherish Yearn arrived, and Parker along with handfuls of scouts, church members, and volunteers from the community showed up to participate in the project.  What an absolute joy it was to watch as these sweet Chinese elderly people shared their stories and feelings to each of the volunteers.  It was impossible to measure who it benefit more, as you could feel the energy from everyone in the room. 

 

Not only was Parker able to interview many of the residents himself, he involved his whole troop, as well as family members, who all were fascinated by the stories they heard.

Alison and Tyson with one of the residents.


Tyson learned so much through this project and is already working towards his Eagle Rank, too.


John, also, was there to help out.  No one wanted to miss out this opportunity of a lifetime to participate in history in the making!

Bracken typing as he listened.

 


Interpreters to help put the words in the books not only in English, but Chinese as well, so that everyone could enjoy the books.

 



Everyone had such a great time that participated in the project!



After many hours of Parker typing and compiling the participants' stories into a book, he returned to Cherish Yearn's English class. After expressing his thanks to each of them for their participation,  Parker handed each member one of the finished memory books.  For the next half hour there was not a sound in the room, as each member read over not only their personal story, but each of their classmate's stories as well.  Hugs, handshakes, and huge smiles from each of the member's were received by Parker which he definitely appreciated.  However, most of all,  Parker received a personal satisfaction for a job well done, a strong lesson of his personal freedoms of being an American, and lifetime of new Chinese friendships!!!

The final version--it turned out fantastic!

By the looks of their faces, I think Parker's giant Eagle project was a success!

Most of these residents had never had a scrapbook or written history in their life, so this truly was a real treasure for them, as well as for their posterity.

Parker brought these great treats as a thank you to all the residents.

Some of the many resident who received the books.  What a great Eagle Scout Project, Parker!

Congratulations, Parker, for a job well-done--and Congratulations, John and Alison, for helping him make it through to the very end for this great accomplishment! 

Thanks, Alison, for the great write-up and pictures so that we can see all that was done in accomplishing this Eagle Project.  Parker gave us a copy of this book, and I will tell you--it is a real treasure!