Friday, March 30, 2012

Special Needs Spotlight: Daylon





I am blessed to be the wife of a wonderful man and the mother to 5 beautiful children.  Our youngest child, Daylon, was born with a rare genetic disease called, Epidermolysis Bullosa, or EB for short.  According to his doctors, EB is the worst disease you've never heard of.  Daylon has a misspelling in his DNA and his missing a link (or ingredient) in his skins make up.  He is basically missing the roots that attach his skin to his body.  A gentle kiss or touch can lift away the skin resulting in painful blisters and wounds equivalent to second or third degree burns.  When Daylon was 3 weeks old, we got the test results back on the sub-type of EB that he has which is Junctional Herlitz.  This form of EB is known to involve the eyes, lungs, mouth, stomach and GI tract and the urinary tract and in almost all cases, takes its victim's life within the first year of life.  We were told that if he lived to be a year old, he wouldn't want to be alive.


Babies and children with EB are wrapped head to toe in layers and layers of special (in other words, expensive) bandages and have to endure painful baths and 2-3 hour long bandage changes daily.  Daylon required sheep skin blankets and memory foam pads just to lay on the floor and play.  In early infancy, I remember one occasion while rocking Daylon, the side of his head slipped past his protective layer of blanket as he fell asleep with his bare skin touching my arm.  The sweat from his head acted like an adhesive and when I unknowingly, tried to lay him down, a piece of his scalp and thin hair tore off.  No matter how gentle we tried to be, we would cause him pain and it was heart breaking to say the least.

The FDA approved a trial Bone Marrow Transplant at the University of Minnesota to accept all serious forms of EB in November of the very year is was born.  By that time, Daylon was breathing had become labored from blistering along his airways and he had struggled with several serious infections, when knew if we didn't try something we were going to lose our little boy soon.  In the spring of 2010 we moved our family of 7 across the US to Minnesota to try to save our little guy.  Our older son, Caleb was an identical match for Daylon and was so excited to be his little brother's hero.  On June 24th, 2010 after 9 days of chemo, Daylon underwent the Bone Marrow Transplant with his big brother by his side.  Daylon's skin has improved drastically since and while it's still not yet like your skin or mine, he is now able to wear clothes, play with plastic toys and can even be TICKLED!!  Unfortunately, because of the strong dose of chemo, he has suffered several injuries to vital organs, the worst of which has been brain damage. Daylon brain is constantly repairing itself though and we're hopefully that by the time he's school aged, he will be like his peers.



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Miggy:  Can you take me back to the day Daylon was diagnosed with EB?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now? 

Jennifer:  Daylon wasn't actually diagnosed with EB for several weeks.  When he was born, he was missing the skin on the side of his nose and his fingernails were crooked and lifting away from his fingers.  The doctors tried to convince me that he had scratched himself, but I knew that they couldn't be right.  There was no way someone could scratch all the way down to flesh like that.  Over the next 48 hours, liquid filled blisters appeared at first in his diaper area and around his mouth (from breastfeeding) to all over his body.  He looked to me like he had been dragged through the rain forest and caught some sort of unknown disease.  I was a complete wreck...I just remember crying a lot.  At a week old, he was admitted to the children's hospital for testing.  All and all, he saw 16 doctors before someone was able to perform the right test to diagnose him.  She told us about EB and I just remember thinking, How is this even possible? How will he crawl? How will he eat?  Then 10 days later when the results were in, we went back to her to get the confirmation and sub-type.  It's a horrible, heart shattering thing to hear that your baby is going to suffer more than you have ever seen another suffer and then die all in the same year.  I just stared at him sleeping in his infant seat, praying to wake up from this nightmare.  



Miggy:  Explain how Daylon’s specific special need affects your day-to-day life?  

Jennifer:  When Daylon wakes up, he is prone to vomiting for the first 2 hours.  It's not uncommon for him to get sick on the way to school in the morning, which then means that my older kids are late to school.  When his stomach is blistered, he may get sick 2 dozen times in a day, which can be exhausting for us too.  If it's hotter than 85, we don't go out because the heat makes Daylon's skin kind of melt away and if it's cold, rainy or windy we stay in because he's susceptible to illness.  When my kids bring home a cold, 9 times out of 10, he gets bronchitis at the very least.  Every night he needs to be hooked up to his g-tube pump and there's dealing with beeps and alarms all night long.  If he's having a rough week breathing wise, then we give breathing treatments, which only take 15 minutes or so, but it kind of breaks up your day. We have lots of doctor and therapy appointments to get to, medicine to give, the usual for any special needs kid.

Daylon's first birthday!  
A huge milestone for a child not expected to live year.   


Miggy:  What are the biggest worries you face for Daylon?    

Jennifer:  Well, my biggest worry is him dying. It's a selfish worry I know, but I don't want to lose him. I guess my next biggest worry is that he'll feel like he's not accepted by his peers.


Miggy:  Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations?  
 
Jennifer:  Well, it seems that EB has spoiled Daylon in a way. He's used to sleeping and touching the finest fabrics, so now that his skin is a bit tougher, he doesn't want to anything to do with your everyday material. My husband and I joke that he thinks he's a little prince. Ugh. A cotton/Poly blend you say?! Get that away from me.  Haha 


Miggy:  How can people best approach or respond to Daylon? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Jennifer:  YES! People assuming that he has some sort of contagious disease has been a HUGE problem for us.  We've been asked to leave stores before... seriously.  The transplant has allowed his skin to heal, or in other words, scab up and we're always being asked if he has a horrible case or chicken pox or leprosy.  I've made up these little business cards to hand out to people and it's helped, but I just wish that people would ask what he has nicely, instead of assuming that they know and that we're putting them at risk.  I also wish that more people took their children aside and told them not to point, stare and say hurtful things to those who look different.  The number one thing that kids say? That baby is ugly. That whole "Sticks and Stones" thing... not true.



Miggy:  What is the biggest lesson you’ve learned since becoming a special needs mom?    
  
Jennifer:  You don't know what tomorrow will bring, you have to enjoy today. You hug your kids a little longer when you understand the value of a day

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Jennifer I want to thank you for such a wonderful, educational spotlight.  What a beautiful, sweet little champ that Daylon is!  And what an incredible big brother.  Love to you and the whole family.  

I was very excited to do a spotlight about EB since this was a disease I learned about almost 10 years ago through a friend who had done some fundraising for EB families.  I saw first hand the pain and heartache this disease caused.  Through all the spotlights I've done and all the conditions I've learned about, the ones that I truly think are the hardest are the ones that involve pain and suffering for young children.  My heart really goes out to EB families.  You can learn more about EB at Debra.org and Puckfund.org.  You can read more about Daylon and his family here.      

As always if you or someone you know would like to participate in my special needs spotlight please email me at thislittlemiggy at gmail dot com.  

Have a great weekend!  

13 comments:

  1. Anonymous2:30 PM

    This made me cry!

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  2. i watched a documentary on netflix about a mom who adopted several special needs children, and two had EB. seriously i think that is the saddest thing an innocent young child could go through. thanks for introducing us to them.

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  3. Kelly6:17 PM

    I have the much milder EB Acquisita which I developed as an adult. I liked reading about Daylon and am glad to hear the bone marrow transplant has improved things for him. He is an absolutely adorable little boy!

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  4. This was my first exposure to EB and my heart literally broke as I read this. It hurts to know that little ones have to suffer such a hard thing and that their families have to navigate such pain. I think that this family is incredible and I think that Daylon is a hero.

    I send them all love and prayers! Thank you so much for sharing your story with us.

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  5. Anonymous9:23 AM

    Good luck to Dylan and his family! What an awesome thing that your other son was perfect match.
    Alexandra

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  6. Linda P.9:13 PM

    Thank you, Miggy and Jennifer, for sharing with us about that precious little boy, Daylon! I am so thankful that his skin condition has been improved. What a hugely gigantic blessing. I have a special needs son, too, Jennifer, and I appreciate so much your sharing Daylon with us.

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  7. I love your strength and perspective. This was just the start to my day that I needed. Thank you for sharing your story. I think your idea of little business cards is brilliant! One day we were followed through the grocery store by some teenagers who wanted to gawk at our special needs daughter. I didn't know how to handle it. My daughter wasn't aware of it so I didn't want to draw attention to their behavior, but I wanted to make a point and educate them all the same. In the end I just left the store. The business cards would have been perfect! Thank you! God Bless!

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  8. Wow. Thanks for sharing this story with us! We might all be members of the "Special Needs Mom club" and on some levels we can all relate to each other, but there are some things that are unique to our situations. I pray for this sweet boy and his courageous mama! Thanks again for sharing!

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  9. Anonymous9:42 PM

    Wow that was really touching! I can't imagine having those feelings a s a mother! What a special family, I'm so glad that he has lived so much longer than the drs said he would! It would be so hard to watch your child suffer like that!

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  10. I love your special needs spotlights, this one especially as my daughter also suffers from EB, hers is a milder form called EB simplex but there is rarely a time that she doesn't have at least one or more blisters on her feet or hands and simple things like the monkey bars can cause terrible damage to her hands. She's 8 now and often wishes she didn't have to have EB. Thanks for spreading awareness.

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  11. I think Daylon is so, so, amazing...and his mom is so incredible. I loved the spotlight on him, Miggy.

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  12. Daylon is a lucky little boy. His parents are amazing loving people! And did I mention his amazing sibling?
    Great family, great kid!

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