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.
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!
