Made With Love

September 3, 2019September 3, 2019 Category: Stories of Hope Posted by NFED Intern

Anissa Morgan and her husband, Damon, are the parents of two boys, Carter and Liam, who are both affected by hypohidrotic ectodermal dysplasia (HED). Anissa has discovered first-hand what it is like to battle for coverage with insurance companies and deal with the day-to-day complications that come with raising two boys who are affected by drastically different symptoms.

Back to the Beginning

Anissa could tell that Carter was affected by HED from the moment he was born. He was born with what she describes as “peely skin” that gave him an almost sunburned appearance. Carter was also born with a yeast infection so severe that it left a red, open wound on his back. Anissa recognized these symptoms from her father, who is also affected by HED.

Despite her own diagnosis, Anissa knew that it would take genetic testing to receive a definite diagnosis. However, it took four and a half years for Carter to receive genetic testing as Morgan’s insurance company would not cover the cost.

They were told by their own doctors that HED was so rare that it was unlikely that insurance would pay for the testing. In September of 2018, Carter finally received genetic testing that confirmed his HED diagnosis.

Despite these initial setbacks in her journey as a new mother, Anissa did not let anything deter her from loving her son.

You can say it is tough trying to parent two boys with medical issues, but I want everyone to know that all of these ‘diseases’ do not define who my sons will become or who they are. They are made with so much love and are the strongest kiddos I have ever come across.

Siblings with Symptoms

Although Anissa is a mother of two boy affected by HED, her experience in dealing with their symptoms is very unique to each son. Her family is the perfect example of how one condition can manifest so differently in each individual.

Carter, at age five, still only has developed two, conical teeth. He struggles with speech issues because of this. He has no sweat glands and very little fine hair. Carter also deals with eczema caused by his HED.

Liam, on the other hand, struggles with an entirely separate set of symptoms related to his HED. Since birth, Liam has been diagnosed over 20 times with aspirating pneumonia and they were told he had a floppy airway that he has since grown out of.

Aspirating is a condition in which food, liquids, saliva, or vomit is breathed into the airways. The Morgans now know that Liam aspirating is related to his HED, not pneumonia.

Because of these complications, Liam now has a gastronomy tube (G-tube) in place that prevents aspirating and allows him to eat soft solids. This has allowed him to gain some healthy weight, but Liam is still classified by his doctors as “failure to thrive” because he does not meet sufficient weight requirements for his age. Anissa hopes that will change as he continues to eat and develop.

We have been admitted on 12 separate occasions between University of Iowa Stead Family Children’s Hospital and our local hospitals due to his genetic issues, aspiration and failure to thrive.

Finding Resources Isn’t Easy

Anissa shared that her sons’ complicated health histories have also made finding child care difficult. She struggles to find someone who can watch her boys who is trained medically to handle their needs.

Finding specialists to treat her sons’ medical needs has also been a struggle. She has found that she cannot just enter an emergency room and expect them to understand what her sons are going through. Instead, she has to take charge of her children’s health and act as an advocate for them when dealing with medical professionals.

Coping with the Heat

On a day-to-day basis, Anissa tells us that the Iowa heat is their biggest enemy. Carter and Liam both develop heat rash easily and struggle to stay cool. If they spend more than an hour out in the sun, their skin will become “scaly” and they will overheat.

To combat those harsh Iowa summers, Anissa recommends the following:

• Cooling misters with fans
• Wet t-shirts
• Carrying a cooler full of water
• Water-based activities

It is not only in the summer that her boys have to worry about overheating, however. Anissa tells us that she is vigilant about making sure that their furnace never runs too hot in the winter. She keeps their fans running in their rooms at night to prevent this from happening.

Getting Involved

Anissa discovered the National Foundation for Ectodermal Dysplasias (NFED) through her father who had found the foundation online when doing research on ectodermal dysplasias. She then connected with us on Facebook and got her family involved with us as well. Her sister, Priscilla Reyna, and nephew, Owen, shared their story in an NFED blog post which detailed their journey with ectodermal dysplasia.

Anissa decided to take her love for advocacy to the streets and held a fundraising event called, Carter’s Care E.D. Fundraiser. Carter’s family sold homemade bracelets for two dollars which raised awareness and money that went towards Carter’s care. They held the event at Buffalo Wild Wings who were generous enough to donate 10% of that night’s earnings to the NFED.

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