Apr 26

Meet Daylon—Help Make a Miracle Giveaway

in Giveaway, News

Meet 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.

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