December, 2009

Dear Loved Ones and Supporters,

Another year has come and gone, and with 2009 ending, I am very proud to say our foundation continues to grow and prosper thanks to our dedicated supporters, especially those whose lives have been affected by Menkes disease. I continue to be amazed by how much good our sweet little boys can bring out in family, friends and strangers.

We kicked off this year with a wonderful fundraiser in Kansas City, MO honoring Carson Bowman. His family generously invited Drew and I to attend a lovely evening raising money to help with Carson’s medical expenses, as well as providing us with a forum to discuss our part in promoting awareness of Menkes disease. To learn more about this perfect night, see Carson’s story under the "Menkes News" tab.

The month of March had two very special events for us personally that honored our beloved angel Wesley. Drew’s sister, Julie Eckman ran her first marathon in Washington, D.C. after many laborious months of training. Her idea of promoting awareness while achieving a personal goal inspired several other supporters to do the same throughout the year. (Click here to read the related stories.) Another wonderful experience in March came after encouragement from my work friends to join their quilt club. I decided to join the club with the hopes of making my first quilt using patches from Wesley’s clothes. Not only did I walk away with this quilt (which I will cherish forever), but we also banded together to create another quilt which we auctioned off, with the funds raised going to the foundation.

In April, we embarked on a new golf tournament that will be held each year in honor of Ben Larrick in Baltimore MD. His loved ones have literally brought tears to our eyes on multiple occasions with all the special ways they raise money and support for the foundation, as well as educating so many people about the disease Ben lives with daily. In April, we also continued our yearly tradition of forming a team for Leonardtown’s annual Family Run for Hospice.

We took a break from attending fundraising events during the summer months, but thankfully our supporters, like the organizers of the Annual Colin Hayes Softball Tournament, continued to spread the word.  During this time, we were still working hard at promoting awareness, by concentrating on sales of our marketing items such as the recycled tote bags, awareness pins, t-shirts and golf shirts. We use all funds we raised to purchase advertisements in prominent medical journals with the hope that more medical professionals will learn about Menkes and will be able to diagnose infants sooner to improve quality of life treatments.

During the fall, we continued our annual tradition of celebrating Menkes Awareness? Month during November. We always think of different ways each year to remember our Wesley's Angel Day (11/15/06) and Birthday (11/30/05). This year we traveled to Tampa, FL to celebrate the month in the place where he passed on to his heavenly home. Since Hospice remains a passion for us, we like to give back, so we organized a team of supporters to participate in the Hike for Hospice in Wesley Chapel, FL. 

We brought our year to an end by selling Silver Christmas Bell ornaments trimmed with "Menkes Awareness" ribbons. Each bell's gift box contained the quote from the classic movie "It's A Wonderful Life": “Every time a bell rings, an angel gets its wings.” We felt this encompassed the love and joy we feel towards both our heavenly and earthly angel boys who are afflicted with Menkes disease.

There are days when I feel like I am not doing enough to honor Wesley and his friends, but it’s because of the support and encouragement that I receive from all of you that I know our efforts are making a difference. Thank you for helping me to keep the promise I made to my first born child three years ago. Special thanks for making 2009 such a success and we look forward to starting off 2010 with a bang by promoting awareness of Menkes disease!

Hugs to you all!

Jamie Eckman
President
The Menkes Foundation

------------------------------------------ From: June, 2008------------------------------------------

Dear Friends,

I felt the need to correspond with our supporters once again and plan on giving updates more frequently on our works with the foundation. It certainly has been a busy year raising awareness for Menkes disease and a very successful one as well.

The creation of this website has helped us to establish a presence among Menkes families and medical communities around the world. The website has provided us with the opportunity to offer support and encouragement to those who have sons afflicted with Menkes. We have had the privilege to communicate with amazing parents, from our neighboring U.S. states to such far away places as Mexico, Guam, Holland, France and South Africa.

Many people have graciously and generously donated to the foundation out of loyalty and support, as well as to honor and remember these special boys. With any charity, people are rightfully curious as to where the money is being spent, so the following is a breakdown of the foundation’s activities over the past 14 months.

Our first item of business was to create Menkes Awareness items, such as 10, 000 copies of the brochure we developed to educate physicians and the public as to Menkes symptoms and diagnosis. We also purchased a large quantity of give-away items, including 600 Menkes pins, 100 T-shirts that were worn in a local Hospice race, ink pens, memo holders, and Menkes “binkie” holiday ornaments. With most of these items, we broke even, or in some cases took a financial loss; however, these items have been a key part of what we do, because they enable us to raise awareness in our local community, as well as in the communities of other Menkes parents.

The largest financial expense has been for the “What is Menkes?” magazine advertisement in The Official Journal of the American Academy of Pediatrics. Thus far, two separate issues have been published in October, 2007 and again in April, 2008 at a total cost of $10,000. This publication reaches the approximately 60,000 pediatricians across the country who represent the front line in the battle to properly diagnose Menkes disease in a timely fashion. Pediatricians are typically the ones who first examine an infant that is not meeting developmental milestones. Therefore our goal is to help these physicians recognize common Menkes symptoms. Of course, we also try to get the word out about Menkes in FREE publications, such as newspapers and newsletters.

We have also been able to use the air waves through a generous donation by Birdie Wester, a dear friend of the parents of Baby James, another Menkes child. Birdie used her knowledge of the radio industry to create two Public Service Announcements (PSAs) for radio stations in Jacksonville, Florida and Fort Wayne, Indiana. These PSAs have educated listeners about Menkes disease at no cost. We are so grateful for the professional audio recording that she created from the information on our website, but we know we cannot rely on this type of free advertising in the future. We are in the process of determining which cities have the best radio markets for reaching high profile pediatricians and specialty physicians. We plan to broadcast PSAs in these areas, so we can increase awareness of this disease and hopefully spur increased desire among the medical community to further research Menkes.

While the Menkes Foundation all started as a tangible way to ensure our son Wesley would never be forgotten, it has turned into a passion that both Drew and I are devoted to for the rest of our lives. We are using our talents as a registered nurse and a graphic designer to perform all duties necessary to run a corporation. This allows us to use all the donations we receive towards our awareness campaign.
We thank each and every person who has allowed us to keep our promise to our son Wesley, to promote awareness of Menkes disease. In the midst of our grief, we feel confident that our hard work and perseverance is rewarded each time we come in contact with another Menkes family.

Fondly yours,

Jamie Eckman
Mother to an Angel

------------------------------------------ From: June, 2007------------------------------------------

Greetings,
My name is Jamie Eckman, the proud mother of angel Wesley Quinn who entered this world November 30, 2005 at 8:24 a.m. My husband Drew and I anticipated this day for years after praying endlessly that we would be given the chance to become parents. On the way to the hospital at 5:00 a.m. for our scheduled C-section, we listened to "Eye of the Tiger” from the Rocky movie’s sound track. Little did we know that this song would symbolize that our precious son would spend his days fighting to live.

Our delivery was speedy without complications.  Our new baby boy weighed in at 7lbs. even and was 20 inches long with beautiful bright blue eyes and fuzzy blonde hair at the crown. He seriously looked like a younger version of my father who happened to be present for his birth. But by 4 months, Wesley started exhibiting symptoms; first, it was just the failure to meet some developmental milestones, but then he began to suffer from seizures.

Sadly, after many months of battling hospital stays and many pediatrician visits, we were finally given the diagnosis of Menkes Kinky Hair Syndrome in June 2006. Wesley was 8 months old. Once the diagnosis had been confirmed with multiple blood tests and hair sampling, my husband spent hours upon hours researching the disease, discovering little more information than what our genetics doctor had given us prior to discharge. We took a vow that we would do our part in educating the medical community for few, if any, of the physicians we came into contact with after the diagnosis had ever heard of this dreadful disease. More importantly, we needed support from others who were experiencing the anticipatory grief that we were facing with his prognosis.

I was put in contact with another Menkes mother, Tina, about a month later and what a difference it made in caring for our son. She was able to comfort me, offer advice on medications and treatments, laugh and cry with me, and reassure me that there was hope when no one else could. She remained a rock for my family and I until the very end when Wesley took his last breath. Her support continued in that she allowed me to visit her and her son after the funeral of our baby when I needed to be in the presence of another angel so badly. Sadly, her son Lance Jr. passed one month after our Wesley. I firmly believe God put our two families together so we could face this tragedy side by side. It gives me comfort that our boys are enjoying the halls of Heaven hand in hand.

I promised my baby boy a few weeks before his passing that I would spend the
rest of my days here on earth advocating awareness of this disease and honoring
him by sharing his strength and resilience in fighting the horror this disease inflicts.
I long for the day that we are reunited and I can see him walk and hear him talk.
He deserves to never be forgotten, and as long as I have breath in me, he will
never be.

I ask that you will take the time to view our web site and become more aware of Menkes. My prayer is that together we will raise enough awareness that someday someone will take interest enough in curing this disease. Please do it for all of the Wesleys in the world who deserve a chance at a lifetime.

Jamie S. Eckman
President
The Menkes Foundation