We are Family! My Brothers, Sisters and Me!

By Chris and DeAnn Huxman

In 2001, our second son, Tyler, was born with ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. We had never heard of EEC, had no information about it, and had no idea what the future would hold.  We didn’t know where to turn or where to find information.

While searching the web for anything about EEC, we came across the National Foundation for Ectodermal Dysplasias (NFED).  We stayed in contact with the NFED for the next couple years. In 2005, we noticed an NFED Family Conference was scheduled to be held in Kansas City, which was within driving distance, so we decided to attend.

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(Back row, l-r) Ryan, Chris and DeAnn (Front row, l-r) Grant, Andrew and Tyler Huxman 

Our first NFED Conference was a life-changing experience for Chris and I, as well as our son, Tyler, and our older son Ryan, who is not affected. When we arrived, we were greeted by name by the Executive Director at the time, Mary Kaye Richter – and we hadn’t ever met her before!

We soon found out the NFED Family Conference was definitely different in a very positive way.  It is a national organization but has a local and “family” feel.  Each person arriving at conference is not just a number or name on a tag.  From the moment of arrival or contact, it is immediately evident that the people associated with the NFED care about each individual person!

This Conference was overwhelming to us because of the massive amounts of information we heard over just 2½ days. The information was presented by doctors who actually knew something about ectodermal dysplasias and EEC, unlike all the doctors we had seen in clinics previously.  Instead of us having to educate them with our limited knowledge, they were educating us with new information and it was awesome!

We walked away from our first Conference knowing we would be returning yearly, feeling that we weren’t alone, and knowing we had just found a new “family” we had not known previously.  Yes, our brains were overloaded, but each year that we return to Conference helps the information settle in and become a part of life.

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The Huxmans made instant friends with the Kelso family at an NFED Family Conference.

 

In 2005, we were only able to meet two other people with EEC, Jack and Norma, who were full grown adults. We loved the interaction and instant friendship developed with Jack and Norma at Conference but were a little disappointed that Tyler wasn’t able to meet anyone closer to his age, another child.  St. Louis in 2006 changed that for Tyler as he met five to 10 other children with EEC.

As parents, we met the Kelsos and found an instantaneous bond.  Our friendship was formed immediately as we experience many similar things in life that others not living with EEC can’t understand completely.  We have now attended 10 straight conferences. For the last seven, we have vacationed together with the Kelsos before or after Conference.

Our children call each other brother and sister and as mothers we’ve deemed ourselves as “sisters.”  Without the NFED and EEC, we never would have met such dear friends.  Although we specifically mentioned the Kelsos, there are other families that we feel very close to who we see only three days out of a year.  It is wonderful to spend a few days experiencing life with others that know exactly what life looks like day in and day out.

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For three days a year, they are best friends. 

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The Huxman boys and their Family Conference buddies.

 

At conference in 2007, Tyler met another EEC boy his age and they immediately became best friends. They see each other three days a year, but during those three days they are inseparable.  The pictures of Tyler and Zemery together could be mistaken as brothers, so we just say they are “brothers from different mothers.”

It is always sad when they have to say farewell until next year.  This last summer was the first summer they haven’t seen each other at conference in eight years and it was tough on both of them.  They’ve created a bond that is strong and will last a lifetime.  We are so grateful for their friendship.

From the first Conference we attended, we fell in love with the NFED and those who work for the organization. We wanted to get involved directly and help in any way possible.  When the Family Liaison program started, I was asked to be a member to represent the central state region and jumped at the opportunity.  What a wonderful way to share the passion and love I have for the NFED with others and share my story to help another family in a difficult situation.

It’s a great way to stay involved, be a part of conferences, and place myself in a position to talk to new families needing support.  In August of 2008, we welcomed our fourth son, Grant, who was also born with EEC.  Once again, this was not what we had envisioned for our lives, but the experiences and connections we’ve made through the NFED make it all manageable and wonderful.

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All of the Huxman boys enjoy Family Conference – not just the ones who have EEC.

Fundraisers are a huge source of funds for the NFED to keep going. For years, we wondered how to give back to the NFED since the organization had given so much to us.  In 2011, we decided to host the Huxman Run 2 Sweat, a 1-mile fun run, 5K, and 10K fundraiser for the NFED.

Everyone kept telling us to do an event based on our interests and one that we would enjoy.  We chose a run as we both enjoy running and knew many others who would be willing to participate in this type of event.

The first year far exceeded our expectations for participants and funds so we have continued the run yearly.  The first four years we had the event in October, but as we are preparing for our 5th annual event, we are looking at a spring date instead.

We believe it is our responsibility to be actively involved in fundraising to guarantee that the NFED will still be around when our affected children are grown up and starting their families. This organization is vital for many people’s lives and needs to be around for generations to come. In addition to fundraising, educating and raising awareness for the NFED are important results of the Huxman Run 2 Sweat, which is why we continue to host this event.

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These are some of the different ways we’ve become actively involved with the NFED. We attend Family Conferences, volunteer as a Family Liaison, working with the Family Conference Planning Committee, and host an annual fundraiser.

Our family has been touched by the NFED and believes in the importance of giving our time, resources, and support back to the organization that has impacted our lives immensely.  We love the new “family” we’ve found with the NFED! I hope my story encourages you to volunteer for the NFED and/or hold a fundraiser to create awareness and funding.  Try to “Make Your Mark.”

Editor’s Note: DeAnn is an NFED liaison, serving families in Kansas and Oklahoma and lives in Moundridge, Kan. with her husband, Chris, and sons, Ryan, Tyler, Andrew and Grant.  Tyler and Grant are affected by EEC syndrome.  Chris and Deann host the Huxman Global Run 2 Sweat fundraiser for the NFED. 

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Ectodermal Dysplasias: How Nails Can Be Affected

The nails in some types of ectodermal dysplasia may be…

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Fingernails in ectodermal dysplasias can be thin and have lines.

  • poorly developed,
  • small,
  • thick or thin,
  • brittle,
  • discolored,
  • cracked,
  • abnormally curved, or
  • ridged.

In addition, they may grow slowly or shed periodically and may develop light spots, lines, or patches.

The nails and surrounding cuticle area may become infected by fungus, yeast, or bacteria.  If this occurs, nails may become thick or discolored, and the area may develop a bad odor, or become swollen and tender.

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Toenails can be thin and nearly absent in certain ectodermal dysplasias as seen here.

Treating Nails in Ectodermal Dysplasias

Like the hair, nails are made up of dead protein.  Medications will treat secondary infections but will not correct the inborn nail defects.

  • Lubricants such as petroleum jelly or lanolin can be massaged into the nails to reduce some of the dryness, brittleness, or cracking.
  • The nails should be kept short and trimmed smoothly.
  • Thick nails can be filed with the fine pumice used by beauticians for pedicures. Pumice can be purchased from most beauty supply companies.

 

  • Thick, crumbly nails may indicate an infection and should be examined by a physician. This is especially true if the skin around the nail is swollen, red, tender, or if it drains a yellow colored material.
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Fingernails in some types of ectodermal dysplasias may be thick and crumbly.

Synthetic nails (sculptured nails) are available. Not everyone can use these products, because they may cause further damage to nails or allergic reactions.  If sculptured nails are considered, a technician experienced in the proper technique to apply them should be consulted.

 

This article is adapted from content in “A Family Guide to the Ectodermal Dysplasias” published by the National Foundation for Ectodermal Dysplasias.”

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Pen Pals Across the Pond!

By Peter Brennan

New South Wales, Australia

When our children, Alice and Tom, were born, we were fairly sure where the parenting phase of our lives would take us. We would live in our little house in Sydney. Our children would go to the local school. We would celebrate birthdays and the holidays. We thought things would run pretty much the way they had for us as children growing up. We were prepared for the regular childhood problems. Colds, flu, broken bones etc.

Tom Brennan Currently

Tom Brennan in 2015

Tom Brennan and his sister Alice Current

 

But when we were told that our son, Tom, had a rare genetic condition called ectodermal dysplasia, we were not prepared! Tom was just 14 months old and we were on another visit to emergency room with a temperature we couldn’t bring down. The doctor then told us that Tom would probably not survive past two years.

Our little family began a journey we had not prepared for. We have taken long winding paths when a much shorter path was there. And we have traveled alone when there were many people willing to travel with us.

The Brennan and Ferris Family in Australia

The Brennans (left) with Donna Newton and Seth and Mac Ferris

The very best thing we discovered was a family in Brooklyn, New York. Through the National Foundation for Ectodermal Dysplasias (NFED), we met and have maintained a wonderful relationship with the Ferris-Newton Family. Their son, Mac, is also affected by ectodermal dysplasia and together we have traveled with the boys from toddlers to amazing young men at college.

Mac Ferris and Tom Brennan together in Australia

Mac and Tom as kids

 

Mac Ferris and Tom Brennan in Australia

Seth Ferris, Donna Newton, Mac Ferris, Peter and Tom Brennan

The NFED was the difference between Tom’s condition being perhaps a lonely path, not knowing anyone else affected, to one where our family celebrates the birthdays and holidays, the good and the hard times with an amazing family across the pond. The families have been friends now for over 16 years. We stay in touch by writing letters and cards, by emails and by social media and an occasional visit.

The journey that your children take you on may not be the one you planned but with the NFED it can be a rich and rewarding one. Volunteer and make a difference in someone’s life affected by ectodermal dysplasias. Make a friend (a.k.a pen pal) and start your own life long “friendship” journey.

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Dear NFED volunteers,

We can’t think of a lovelier way to acknowledge all of the hard work you do than by setting aside the month of April to recognize and thank you and all of our volunteers. Just last year alone we had 364 volunteers who dedicated more than 3,652 hours to the NFED. That is truly amazing! dance fundraiser 3

You are the backbone of the NFED and I thank you with all of my heart.  You allow the NFED staff to do many things that we would never be able to do without your help.

You are critical to the success of this organization. Whether you help with family conference, serve on councils and committees, help us write content, send out mailings, make phone calls, help with database clean up, or help with fundraising…. the list goes on and on… we are so grateful!  Your time is precious, and we appreciate every second, minute, hour and day you give to us!
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On behalf of our NFED family, we would like to thank you for extending your helping hands towards to us when we need the help. Sometimes we don’t even have to ask; you are just here for us.

With sincere gratitude,

Mary

 

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Need to be Needed? Beverly Meier’s Response?

By Cathy Deters

Bev and Cathy

The late Beverly Meier and Cathy Deters 

The year I retired from a teaching career (2008), I knew I would need to do something to occupy the time I had spent in the classroom. There was a void in my life and I wasn’t sure how to fill it.  My dear friend, Beverly Meier, suggested that I volunteer for NFED at their local office.

Bev and Mary Kaye Richter had built the Foundation from the ground up, putting our small town of Mascoutah, IL, on the map.  Being a part of something so BIG and so SIGNIFICANT was thrilling to me.

Several of Mascoutah’s finest and well-respected women were my mentors. They showed me how to fold, stuff, stamp, and organize the mailings we were responsible for completing in an efficient manner.  I learned so much from working with them.  They had YEARS of experience being volunteers at NFED and they shared their love for the Foundation in every duty they performed-teaching me along the way.

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Cathy helps stuff invitations for the Halloween Bash mailing.

For several years, I volunteered on a regular basis and was even promoted to using the computers, running off materials, putting introductory packets together for new families, and organizing the archives.

Each time I entered NFED headquarters, I felt the passion the staff felt for the families and the true appreciation they felt towards the volunteers.  We were important-we were needed!  And, that is what makes volunteering so very vital.

Being a volunteer gave me a purpose and a goal. That goal was to make every activity I performed a helpful one that would make the job of the staff a little bit easier.  Unfortunately, I had to cut back on my volunteering when my elderly mother needed more assistance.  But, I will always remember the importance of being a helping hand.  My dad always told me, “Don’t you retire!”  What Dad really meant was not to retire from life after retirement.

Cathy and Chuck Deters

Chuck and Cathy Deters

We must feel needed.  And, volunteering at NFED gave me that feeling of being needed. I will always be grateful for the experience and always grateful to Bev for suggesting it.  I will continue to be a part of something as great as the NFED for years to come, if they let me and so can you!

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