National Foundation for Ectodermal Dysplasias

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The Hamm Family’s Story

August 17, 2010

By Paul and Susan Hamm

April 25, 2000 was our lucky day when God smiled upon us and gave us our “little miracle” Zachary. He came into this world kicking and fighting and has not stopped yet! He has enriched our lives in so many ways we cannot remember how life was before Zach.

After doing extensive research we finally put all of the pieces together and learned that Zach was affected by ectodermal dysplasia in 2003. Shortly after that we became part of the NFED family. The NFED was and continues to be huge help in our journey with ectodermal dysplasias.

As Zach grew, he came to love all sports, particularly baseball. He never considered for one minute that having only three toes might be a problem for a baseball player. Zach started playing tee ball at age three, loved it and did very well. He has been playing baseball ever since. He has now played 10 “seasons” in six years. His beloved Mudcats are a team of considerable reputation having won three championships since 2006. Zach has hit at least one homerun every season he has played.

In the fall of 2007, Zach started playing golf. His budding golf career was interrupted by leg surgery and he did not play golf again until late spring 2008. He has since played in 16 South Texas PGA Little Linkster Golf Tournaments winning one and collecting medals in seven others. Once again, Zach never considered that golf may be too big of a challenge for a guy who doesn’t do so well in the heat!

Zach has been blessed to have so many people in his life that have loved and helped him. Living in the Houston area, we are fortunate to have a team of doctors who are each considered top in their fields and heroes to Zach.

Zach has also met a number of professional athletes that have made a big difference in his life. He has watched and learned from everyone he has met and picked up an amazing amount of empathy and concern for those around him. This has led the entire Hamm family to want to help those individuals who are affected by ectodermal dysplasias.

Since there are three golfers in the family and we have all played in plenty of golf tournaments, we decided that would be a great avenue to raise awareness and money for our NFED family. We have called on friends, business contacts, family and anyone else we feel could help us in this endeavor. It has helped that Zach is well known and loved in our community.

It has been a lot of work, but like all worthy causes, it is well worth all of the effort.

Comments

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Dawn Page October 23, 2010

I read your article but it left me wondering how affected your son is with Ectodermal Dysplasia, I Have three children, two whom are affected, one worse than the other. Our second has five permanent teeth and the rest primary with bad deteriation. Her nails and hair have been affected but not too badly. We are looking at $70,000.00 for her reconstruction for her teeth. How is it for you?

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Paul Hamm November 29, 2010

Dawn,
Zach has EEC with skekeltal abnormalities. Zach has one toe on his right foot and two toes on his left foot. Zach also has finger and rib anomalies as well. Zach’s sweat glands are not fully functional so he struggles to control his body temp. Zach is missing several adult teeth and also has clefting issues within his sinus cavity. Zach has missing salivary gland as well.
Zach is in the middle of a long orthodontial process to correct his jaw, teeth and tongue. We have endured considerable expense as well but we do have insurance that has helped. Please feel free to contact me at .(JavaScript must be enabled to view this email address) if you want to discuss some issues. I am a member of the NFED Board of Directors.
Thanks,
Paul

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Janice January 06, 2011

Hi Hamm family,
  We have an almost 5 year old miracle named Gabe who has both Ectrodactyly and Anhydrotic Ectodermal Dysplasia. We live in Ontario Canada so we also have hot summers, I was very encouraged to read about your son Zach’s enjoyment with sports I would like to know how does Zach sweat; moderately, hardly at all, or not (visually) detectable? Our son appears to have only one droplet of sweat that appears in the same spot on the hairline of his forehead. Does Zach use a cooling vest for his outdoor activities? Our little guy also has mucosal lining/duct issues missing/damaged teeth he has already had 2 eye surgeries & 2 dental surgeries to remove teeth & silver crown the remaining 4 (back teeth). You mentioned that Zach has missing salivary glands does this mean he doesn’t have saliva or does he drink constantly please explain further, my little one usually drinks 1/2G-3/4G a day (way more than our 4 older children ever drank @ this age) even in winter when our temperatures dip well below 14F. We have not yet met a doctor who knows more than what they read in a text book @ med school so we are figuring things out on our own as we go along, no one knows why he eats so much (2500+ calories/day) but is only 28 lbs & 31 ins we are soon going into hospital to have a 48 hour random growth hormone sampling test performed, hopefully this will answer why he is so small (his younger brother is 6 months and is 20lbs & 26ins just like the 4 oldest). Sorry I have gone on so long your son sounds a lot like ours and we have never had the privilage of meeting anyone else this special! Thanks for your time and for sharing your sons wonderful story!  Blessings Janice

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Paul Hamm January 25, 2011

Janice,
Thanks for your note. I hope Gabe is doing well. Zach appears to sweat only on his head. The remainder of his body remains dry. He does not wear a vest we just keep him wet by applying water as he plays golf or baseball. Zach is missing a salivary gland but he does not have issues with staying hydrated. This may be because we stay on him about drinking water constantly! Zach is a very difficult eater, while he loves all kinds of food we have to make him eat. He has spent most of the last 3 years on a prescription that increases his appetite. Please feel free to contact us if we can help. It is always good to talk with a fellow family! My e-mail is .(JavaScript must be enabled to view this email address).

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Noreen October 31, 2011

Thank you for telling your son’s story. My 8 year old child Juliet has EEC also. Does your son have back pain? My sweet Juliet has been having back pain the right side has been swelling up. The doctor is sending her to another doctor. Holy cow she has seen so many doctors for all kinds of things. She loves sports and animals we have a small zoo. Juliet gets stright A’s in school. She is so happy even throw she seems to always be sick with something. Take care and thank you for putting your story out their.
Noreen

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