Apr 26
2010

Meet Daylon—Help Make a Miracle Giveaway

in Giveaway, News

Meet Daylon.

Daylon

Daylon was born on July 8, 2009 with Junctional Epidermolysis Bullosa (JEB) Herlitz type and was given less than a year to live.  He’s now 9 months old.  Daylon is my friend Jennifer’s little boy.  Epidermolysis Bullosa (EB) is a connective tissue disease where the skin layers lack the protein anchors that hold them together and prevent the layers from moving independently from one another.  Any action that causes friction between the layers (like rubbing or pressure) creates blisters and sores.  EB children are often referred to as “Butterfly Children” because their skin is said to be as fragile as a butterfly’s wings.  The form of EB that Daylon has, is the most lethal type.  What you see happening on his skin is also happening to the lining of his internal organs.  Most patients do not survive infancy because they suffer from debilitating sores and blisters on their skin and lining of their internal organs, which leads to infection, malnutrition, respiratory problems, and a whole host of other problems.

Daylon's sores

The reality of this little guy’s daily life is harsh.  He has to wear cloth diapers and his clothes have to be inside out so that the seams don’t rub against his skin.  Under his clothing he has to wear layers of special bandages (gauze bandages peel his skin off).  Bath time requires the presence of 4 adults.

Daylon at bathtime

His skin is so fragile, the layers of skin are so thin, and he has so many open sores all the time that they have to hold onto his legs and arms so that he doesn’t flail around and hurt himself more.  Once he has been washed, his mom has to pat him dry, put medicine all over his body, and then wrap him in new bandages.  Singing helps to calm and soothe him during this process (he’s partial to “Hey Jude” by the Beatles).  Daylon wants to crawl badly, but they can’t even let him try because it would do so much damage to his little body.  The friction of using his muscles just to push himself up would be too much pressure for his skin, causing it to blister and pop up.  Despite everything, he’s a very happy baby and is quick to smile through his pain.  He’s very sparing with the use of his vocal chords because they are so torn up.  On a good day you’ll hear some of the normal babble that you would expect to hear from a baby.  He loves to lie on his back and play with his feet and examine his toes, even though he can’t bend very much because his hip area is very raw.

Smiley Daylon and family

Just this last November, a clinical trial at the University of Minnesota for treatment of EB received it’s FDA approval.  Daylon was accepted into the trial.  Through a combination of chemotherapy (to try and kill the genetic mutation that carries the disease in his bone marrow, which requires a chemotherapy dosage that is about double what a cancer patient receives) and a bone marrow transplant, doctors hope they can save Daylon’s life.  Daylon’s 3-year old brother Caleb has already been identified as an identical match and will be Daylon’s bone marrow donor.

Caleb and Daylon

Caleb is very proud to be his brother’s “special helper” and will be wearing a t-shirt that says “HERO” on it when he goes into the hospital. Daylon will be the first patient in the world with JEB to receive this treatment.  Not only will he make medical history, and hopefully help progress in the treatment of this disease, but hopefully he will also be given the chance to return home with his family and finally receive a real hug from his mom—something she has never been able to give him.  This treatment is Daylon’s only hope for survival.  Daylon’s medical treatments will be extremely expensive. His family is in dire financial straits and cannot afford the treatment to save Daylon on their own.

Daylon and FamilySo what do I have that I can give in light of the circumstances that life has dealt this little boy and his family?  I have my love and friendship.  I have my prayers and my hope.  And I have YOU.  I know you’re out there, because so many of you have popped in and left kind comments.  I’ve even had the privilege of meeting some of you.  So now I’m asking you to not only put up with my blabbering on and on about my obsession with food, but to help out a special little boy who needs a miracle.  WE can help to make that miracle happen.

There are multiple ways that you can help.  If you live in Southern California, there will be a big Walk-A-Thon & Carnival this coming Saturday, May 1st, from 10am to 4pm.  You can come and walk/run or just enjoy all of the food, drinks, music and games.  I will be running the bake sale booth, so if you come, please drop by and say hi!  Also, if you are interested in donating any baked goods, please let me know (rachael {at} lafujimama {dot} com).

Help Make a Miracle Walk-A-Thon & Carnival

If you don’t live in the area, there are other ways to help.  The blog Serving Pink Lemonade, will be hosting an online auction this week, from Tuesday April 27- Thursday April 29.  SPL will be auctioning off goods & services donated by several talented people & business, featuring anything from photography sessions to jewelry to blog make-overs.

Finally, you can make a direct donation through the Help Make a Miracle website (donation information is in the lower right hand corner).  As an extra incentive, I will be giving away 2 different prizes here on LFM.  To be entered in the giveaway, all you have to do is make a donation and then email me telling me that you did so.  The 1st prize is a Zojirushi Ms. Bento Lunch Jar set.

Ms. Bento Stainless-Steel Vacuum Luncj Jar Set

The 2nd prize is an assortment of some of my favorite kitchen tools: 2 bowl scrapers (one small and one large), a tart tamper, a Lurch Silicone Pastry Brush, a Microplane, and a set of Progressive International Magnetic Measuring Spoons.

LFM Favorite Kitchen Tools

The giveaway will be open until Wednesday, May 5th, at 11am PST.  May 5th is Children’s Day in Japan, and I can’t think of a more perfect way to celebrate at my house than drawing 2 winners from a pool of donors.  Any donation will help, no matter how small.

PHOTO CREDITS: Rachel Kirk Photography

GIVEAWAY DISCLOSURE: I am personally providing the prizes for this giveaway.  These are products that I love and have personally selected.

{ 51 comments… read them below or add one }



Maria April 26, 2010 at 12:43 pm

Wow, what an amazing family. Such a cute little guy. Sending my prayers and best wishes to your friends. I hope everything goes well. You are a great friend. Good luck with all of the events. I wish I was closer to help you bake or do whatever! Beautiful post, thanks for sharing and again, your friends are in my prayers.

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Jenny Flake April 26, 2010 at 12:48 pm

Oh my gosh Rachael, as I am wiping the tears from my face I can’t even believe this, I have never heard of the disease this precious little boy has. Breaks my heart to look at those pictures. Wish I had the means of donating more, but I will for sure go donate something. I’ll talk to my hubby and see if we can’t do that walk Saturday. My prayers go out to this family!! Thanks for sharing such an inspiring story.

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Kayte April 26, 2010 at 12:54 pm

Thank you for putting this out there, Rachel. Heartbreaking but such a warmth of family and spirit and the whole Little Hero part, such an inspiration. God Bless Daylon, his family, and all the other sufferers of this disease.

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Victoria April 26, 2010 at 1:10 pm

Daylon and his family are in my prayers! What a terrible disease! I had never heard of this :(

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Michelle April 26, 2010 at 1:24 pm

OH my goodness! I have never heard or seen anything like JEB before. My heart is breaking for Daylon and his family and I will be keeping them in my prayers.

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Sara April 26, 2010 at 1:42 pm

This just breaks my heart. What a brave little boy! My thoughts and prayers and with Daylon and his family. Let’s help a mircale!!!

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Daydreamer Desserts April 26, 2010 at 1:43 pm

You know you can count on me… I’ll see you bright and early this Saturday. :)

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marla {family fresh cooking} April 26, 2010 at 1:47 pm

What a beautiful sweet little boy. I just gave a donation to his foundation. My prayers go out for this little guy and his beautiful family. You are so wonderful to help share the message about this tragic disease. I hope a cure is found soon! xo

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Eileen Loughman April 26, 2010 at 1:58 pm

What a happy little guy, that just broke my heart. I will keep your friend’s family in my prayers. We donated through his site, wish it could be more.

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Frieda April 26, 2010 at 2:10 pm

Rachel, I have heard about this disease, but have never seen it up this close. My thoughts and prayers are with this family. You have picked a good cause to be involved in. Good luck with the walk-a-thon, bake sales, and giveaways…so totally worth it!

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Gaby April 26, 2010 at 2:11 pm

What a fantastic little guy! He is such a trooper… I am having my family make a donation to the foundation right now. I would love to come to the walk-a-thon too… just need to request this weekend off! Thanks for putting this up… you are an amazing friend!

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Nancy (n.o.e.) April 26, 2010 at 2:16 pm

Thanks for this, Rachael. So touching.

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Kellie Choi April 26, 2010 at 2:29 pm

I just went to Daylon’s website, Help Make A Miracle, and tried to make a direct donation but it didn’t work. Nothing happened after I clicked on the “donate” button. I will try back later but I thought you should let somebody know.
My prayers are with Daylon and his family.

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Fuji Mama (Rachael) April 26, 2010 at 2:41 pm

@Kellie Choi, Thank you so much for letting me know Kellie! The link on the main page is working: http://www.helpmakeamiracle.org/Home.html I’ve let them know about the problem on their donation page.

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Missy J April 26, 2010 at 6:08 pm

@Fuji Mama (Rachael), Fixed the donations button. It should work now! Sorry about that. Never do updates on a website the day you come back from vacation. ;-)

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Emily @Cleanliness April 26, 2010 at 2:48 pm

I found this post very touching. Life is about giving and helping others in need. I am so glad I found this posting. Thank you so much for sharing.

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Fuji Nana April 26, 2010 at 3:07 pm

What a beautiful family. Their family picture is full of love, isn’t it? I can’t imagine having two-year-old twins, much less two OTHER children while caring for this special little guy. They sound amazing. We’ve made a donation and hope to help somehow on Saturday.

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kamran siddiqi April 26, 2010 at 3:12 pm

I cried after reading this. What a poor little guy. My prayers are with he and his family! I am going to try and get this out to all of my followers! Thank you so much for sharing his story.

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Eileen April 26, 2010 at 3:31 pm

A post like this one about this sweet family makes me stop and offer a prayer of gratitude for all the blessings in my life. Oh my goodness, I can’t even begin to write what I’m feeling right now. I’ll make a donation, see if I can make it down on Saturday, and help spread the word on this little boy’s situation. Thank you for teaching me about this disease Rachael – I had never heard of it. Prayers and Godspeed to all.

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MAC April 26, 2010 at 4:35 pm

I’m heartbroken for Daylon and his family. My prayers and positive thoughts are with them. Hubby and I are making a donation. Thank you so much for sharing this story!

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Diana@Spain in Iowa April 26, 2010 at 4:38 pm

Rachael, This was so touching. I can’t even begin to imagine what this family is going through. My prayers are with this little boy and my hope is that in His will, He CAN save this little boy. Blessings my dear friend.

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Mags April 26, 2010 at 4:49 pm

This story brought so many tears. Such a struggle for both the baby and the parents. It breaks my heart. I’m making a donation to help this beautiful family.

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Kelly Azuma April 26, 2010 at 4:50 pm

I cried my way through your article, I never knew such a terrible disease existed. I’m making a donation and will be sending lots of healing energy Daylon’s way.

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Christina Grason April 26, 2010 at 6:25 pm

Hey,
I came across this on FB. Just wanted to say that I am praying for this little boy and strength for his family. I am part of the International House of Prayer in KC MO. We pray and contend 24/7/365 exalting Jesus and contending for a global harvest. I personally will be lifting up this child and asking the Lord to touch his body and bring healing! =)

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Maggy April 26, 2010 at 6:42 pm

I love that you are using your blog as a way to raise awareness for this sweet boy and his family. Much respect, Rachael. Thanks for doing this. We’ll keep him in our thoughts and prayers.

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rebecca April 26, 2010 at 8:07 pm

what a great post and your a lovely person for helping the out

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Mika April 27, 2010 at 5:04 am

As a mother of a child with a severe skin disorder (Ree has icthyosis), I can understand some of the challenges this poor family faces, but I can’t imagine most of it. My heart just breaks for them, financially I can’t help right now but I’m praying. And I’ll continue to pray, and I’ll help spread the word.

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Meredith April 27, 2010 at 7:07 am

Sarcastic Thanks for making me cry in my office this morning and have my co-workers think I have lost it. Although I will pass on this message and they to can cry and then make a donation.

Very Sincere Thanks for allowing those of us who are strangers to this family to get to know about their struggle and the love they have for one another in the face of these challenges. Love is a miracle and my prayers are with them and the healthcare providers they will be working with.

I had no tech issues with the donation button, so the problems seem to have been fixed.

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bunkycooks April 27, 2010 at 7:14 am

I have heard of many diseases over the years, but was not familiar with this one. My thoughts and prayers go out to this family. They are brave and an inspiration to others.

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Wendy April 27, 2010 at 8:37 am

It breaks my heart to see and read this, but Rachael, it is so sweet and thoughtful for you to share this with us. It certainly isn’t easy for us to understand even a fraction of the suffering this little child has to go through! Although I cannot personally do much I will be certainly praying for Daylon and his family and for the Walkathon you are hosting. All the best with everything on the day!

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Kim April 27, 2010 at 8:37 am

This post brought tears to my eyes. I’ve donated, and I will be sending the link to my friends. I hope everything works out for little Daylon and his family.

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TripleScoop April 27, 2010 at 11:10 am

Thank you for making us aware of EB. Heartbreaking but a wonderful story one courageous baby.

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Erin April 27, 2010 at 11:37 am

Oh my. I just cried my way through your post. I can not even imagine.

Thank you for posting this family’s story and a link to the donation site.

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Terra April 27, 2010 at 12:40 pm

My heart just breaks for Daylon and his family. I could never imagine watching my child go through something as painful as this, and not being able to hold them and hug on them. I will be praying for Daylon and his family, that his is the miracle treatment for him. I have donated and will be sending the link out as well. Hoping that we can get enough people to donate anything that they can to help this amazing little angel.

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Cookin' Canuck April 27, 2010 at 1:30 pm

My heart is absolutely breaking for this family and how I hope that this treatment helps little Daylon. What an adorable little boy he is!

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Fuji Papa April 27, 2010 at 2:52 pm

Wow, I can’t even imagine how difficult it is for Daylon and the family. This is a good one to be involved in Rache. Mom said she donated, but I need to see if it was enough. What a great cause.

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Missy J April 28, 2010 at 7:30 am

Thanks Fuji Mama. This is wonderful of you. We’d be lost without you!

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Gaelle@whatareyoufeedingyourkidsthesedays.com April 28, 2010 at 10:45 am

I admire the fact that you used your blog as a way to raise awareness (and money) to help Daylon and his family. Merci.

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susan April 29, 2010 at 6:04 pm

I am heartbroken. However, when I see his smile, I feel there is hope, lots and lots of hope. I just went on to The Ellen Degeneres website and wrote her a poignant email about you, Daylon and the hope for the future of this family! Let’s keep our fingers crossed that this story will touch her as it has touched all of us. xx

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elizabeth April 29, 2010 at 8:12 pm

We are going to see what we can do, my heart breaks for them. I posted a link to this page on FB. They are in our prayers.

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Jenn Francis April 30, 2010 at 8:59 pm

Rachael, thanks for sharing his story on your blog. If you don’t mind, I am going to link up to your blog and share the message with my small group of readers. See you tomorrow!

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Holly May 2, 2010 at 3:12 am

This brought tears to my eyes! I am donating right after I post this comment! I will also post a link on my facebook to let others know about this cause!!! My prayers go out to this family and their precious baby :'(

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Angie's Recipes May 4, 2010 at 1:36 am

It hurts when I see Daylon….:-( He is so little and already been through so much…
:-(((

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Elin May 4, 2010 at 5:46 am

Sigh…it pains to see a child going through so much suffering. Will keep him in my prayer and hope this treatment will be a breakthru for all EB babies !

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Roti n Rice May 4, 2010 at 5:47 am

This is heart breaking! My prayers are with Daylon and his family.

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citronetvanille May 4, 2010 at 10:07 am

This is soooooo sad, poor little baby, it is truly heart breaking to see such a terrible disease in a tiny body. Hope he will be cured soon and be a healthy baby like the rest of his sibblings

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Sara May 8, 2010 at 8:52 pm

What a beautiful boy. I’m touched by his family’s strength. I will make a donation now. My thoughts & prayers are with adorable Daylon & his loving family.

Regards,
Sara

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Magicpez May 16, 2010 at 7:32 pm

Thank you for sharing Daylon’s story. Awareness is such an important step in helping families combat this disorder.
Rachael, please feel free to join http://www.ebfriends.ning.com and tell Daylon’s family to do the same. Also feel free to post there about the upcoming walk.

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Fernando May 27, 2010 at 1:00 pm

Im living in Colombia, im so sorry I have it in my prayers.
God blesses it

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Joyce June 11, 2010 at 1:25 pm

Wrote a $25 donation check to address on website, but it came back. Please advise what address I should re-mail my envelope to?

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chainreaction January 10, 2011 at 3:42 am

I love that you are using your blog as a way to raise awareness for this sweet boy and his family. Much respect, Rachael. Thanks for doing this.

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