EB Worst Disease You Never Heard Of

$19,279 of $15,000 goal

Raised by 327 people in 13 months
No Longer Accepting Donations
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Kahleel is only 20 days old, born on December 28th 2016. He was born with a very rare genetic disorder called EB or Epidermolyosis Bullosa. EB is a skin disease that makes your skin very fragile. So fragile infact it can simply peel or rub off because of the slightess friction. Even clothes can be to harsh at times, the caress and embrace of his parents could actually create enough friction to cause painful blisters that fill with fluid and burst leaving raw unprotected sores, leaving him susceptible to many infections. There is no cure for EB. The only treatment is pain management and bandaging. The pain management and bandages will be needed for life, in fact depending on the type of EB  some patients only have a life expectancy of 25 years of age. Kahleel is currently awaiting biopsy results to determine the type he has but already in his short life he has endured so much suffering and pain. His father is an active member of the US Navy stationed in Bremerton, WA. Him and his wife have been living in a children's hospital in Seattle Washington awaiting authorization to be life flighted to a EB Center in Cincinatti Ohio where they can be close to family and friends for aid and support. Please help this family get to the medical facility that can effectively help Kahleel. Because the disorder is so rare the doctors have not provided the proper care and his conditions has actually gotten worse since he was admitted to NICU on January 4th.  He currently has lost 60% of the skin on his little body. As you can imagine there is so much red tape and financial battles that have prevented this family from getting to the EB center. The family needs to get a medical flight to Cincincati so he can be cared for by the experts who deal with this condition on a regular basis. Please take time to research this disease.. It is in fact "The Worst Disease You Never Heard Of" Then please take time to donate to Kahleel's family and any other families suffering from this horrible condition. This money helps support the family's travel back and forth from Ohio to Washington State, that is not being covered by insurance. It will also help pay for room and board for days, months and weeks of living in hotels and hospitals. It will also cover cost for the expensive special clothing and bandages for Kahleel. It will also go towards medical supplies. Any help goes a long way. Thank you for your support!!



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I am still fighting for you Kahleel everyday. Aunty loves you! There are some really caring generous people out there. We can't express our appreciation enough. Please please continue to pray and spread the word to bring awareness. We are still working to get this little angel to the EB Center... this process has been difficult at times in our minds is should be so simple . Keep praying yall. Thanks for all your support. I have met some really dynamic people that want nothing more but to help Kahleels family. I ask that God grant each and every one of you divine favor in life!
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Thank you so much everyone. I am still fighting. PLEASE continue to pray.
Baby Kahleel today
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Hello Everyone.. I just want to take this time to say thank you. The prayers and donations and well wishes have given us hope. Thank you so much to the people who have sent me emails with medical flight information, it has been most helpful. May God Bless you all!
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Our family is overwhelmed with the outreach of monetary support and prayers. THANK YOU!
Kaddy and Kyera are beyond thankful.
Please keep them lifted in your thoughts so they can stay strong for Kahleel. If anyone has any information they can offer regarding medical flights possibly donated through an organization or private individual please send us a message.
#youdontgettowinEB #notgivingup #ittakesacommunity #forevergracious
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Read a Previous Update
Charlotte Jones
13 months ago
5
5

I just want to thank you ALL for opening up your HEART. NOT many responding to my page. BUT AGAIN THANK YOU ALL AND GOD BLESS YOU

+ Read More
Pope Regina
13 months ago
4
4

I WANT TO PERSONALLY THANK EACH AND EVERY ONE OF YOU ALL NO MATTER HOW GREAT OR SMALL, YOU GAVE OF YOUR HEART, PRAYERS AND YOUR MONEY.. THANK YOU AND AND MY PRAYER THAT GOD WILL BLESS YOU EXCEEDINGLY, ABUNDANTLY ABOUT ALL THAT CAN THINK OR ASK IN JESUS NAME AMEN

+ Read More
Danajsha Swaggin
13 months ago
4
4

Thank. You All for You're support and prayers. God wrap your arms around Our preciou children and my Grandchild. Ease their hearts, You are Able.

+ Read More
Lacey Marie Yantis
13 months ago
4
4

Hi I am a local EB mom in Seattle. Please feel free to reach out to me for anything you may need. I also worked in the pediatric hospital setting.

+ Read More
Tanesha Ealom
13 months ago
4
4

I want to thank you all who's sharing and continually reposting the link for my great nephew I want to thank all you who has gave funds to help my niece and nephew please continue to spread the word please continue to repost please tell everyone you know that would take the time to listen and help our family we need all the help and support you all can give. Thank you so much.

+ Read More
Carla Walcott
13 months ago
4
4

Grace on Wings is a non-profit air medical ambulance, they have a Facebook page. I hope this helps, be blessed !!!

+ Read More
Jennifer Edling
13 months ago
2
2

I'm so sorry that your son (and your family!) has to go through this trial. I am the mother of a 7 year old boy with Junctional Herlitz EB and I remember all too well the pain and fear of having a new baby diagnosed with EB. If you ever need someone to talk to or have any questions, please feel free to ask. There are EB support groups on Facebook as well that you can use as a resource. I also have a guide for hospital personnel to help with hospital cares (ECG leads, temps, blood pressure, xrays, ultrasounds, CAT scans, respiratory care, etc). Sadly, we had to learn the tricks after making many mistakes. I'd love to send it to you guys to see if any of it could be useful for your son as well. My family and I will be praying for you all! {HUGS}

+ Read More
Jessica Green
13 months ago
2
2

Hi! I'm a local EB mom, my phone number was given to you by a nurse, please call or text. I'd be more than happy to help any way I can. My daughter is almost 7 and has JEB.

+ Read More
Blackstarr Starr
13 months ago
1
1

I would like to take the time to thank everyone that personally donated to my great nephew's progress. It's a blessing to see so many people share money and prayer. This is a long journey for The family and my nephew so these donations will be used for so much. We take so many things for granted but God constantly show us that he is a great God. Love you all and many blessings! Peace.

+ Read More
Jessica Schaefer
13 months ago
1
1

My prayers are with all of you as Kahleel fights this absolutely horrific condition. I'm unable to donate money right now, but have shared his page on my Facebook and Twitter profiles. I send you my love and hugs and will pray Kahleel gets the treatment he needs, and for the strength you all will need to fight EB! Kahleel was born on my birthday, and I'm thrilled to get to share it with such a beautiful and brave little boy! :) May God bless you all!!!

+ Read More
Angela Murley
13 months ago
1
1

Your family will be in my nightly prayers!!! May God Bless you with a treatment and cure. ❤

+ Read More
Catrina Whitman
13 months ago
1
1

Try and Look into angel med flight.

+ Read More
Lene Maxwell
13 months ago
1
1

I am so so very sorry. Are you in contact with the EB organization "Debra"? My sincere thoughts are with all of you.

+ Read More
Kadyem Clark
13 months ago
1
1

Thank you everybody for your donations everything done is a step closer. Thank y'all so much words couldn't explain the pain we're in. Thank you for the support and last but not least F*@k EB

+ Read More
Kadyem Clark
13 months ago

Thank You for everybody whether you donated or not at this point no amount of money could ease the pain my son, my wife and I are in. All I ask is please keep us in your prayers during these dark times. He recently was diagnosed with Junctional Epidermolysis Bullosa the Hertlitz form. Please advocate and keep spreading the words of these diseases out here in the world. Sorry to everyone that lost someone to this terrible disease let's all work together to spread awareness. #BeatEB #KahleelCampaign. Once again thank you to everyone who supported us during the dark grey times. Thank I couldn't say it enough....

+ Read More
Abbey Wright
10 months ago

I am lifting up this sweet little boy in prayer as well as all of his family especially his dad & mom. I hope ur able to get him to the correct hospital & that all the money comes together. I also pray that ur son is healed. I believe in miracles & I am asking the lord to do one for ur son

+ Read More
Mesie Lee
12 months ago

I want to thank so many of you who choose not to used your card but so willingly sent donation to help my great-grand son Kahleel.

+ Read More
Mesie Lee
13 months ago

We want to thank everyone who is praying for our grandson-great grandson Kahleel , also for the donations given on his behalf. We still believe in miracles, also pray for strength for his mother and father. God bless. Artemesie B Lee, Marlon Lee.

+ Read More
Tanesha Ealom
13 months ago

Waiting to breathe again Every little breath I take I wonder how life can be so cruel How it's able to pick and choose How we live Our life To come out the wound Suffering Depending on others Even strangers to help make a move Hoping they take their precious time To listen Lend and ear Help what they can bare Stop the shedding tears Heal the hearts that has been struck With fear The hard decisions we have to make Becomes clearer Matter of fact near To the point the facts of life is dear So dear to us we began to gain fear That we try everything in our power To gear up Pulling out all types of armor To shield us from harm Yet I'm just waiting to breathe again To be able to enjoy life This world might have to offer Yet I have to wait Wait for you all to make an decision To move for me So I can breathe again So I can smile With laughter With the touch and the kisses of my parents I so yearn for But see I can't speak They have to speak for me These tiny little hands Want to grab my daddy ears And squeeze my mommy fat cheeks To see her smile and speak at the warmth of my touch My mother my queen Is holding on strong This fight is not yours but ours But blessings is needed You see I'm just waiting to be able to breathe again Tell me Is that asking for much?? Give me a chance to breathe the breath I yearn to breathe #Kahleel Beauty‍♀️

+ Read More
Lene Maxwell
13 months ago

Aww little guy. My heart breaks for you. Sending you love. May you feel comforted. And may your parents gain strength to keep fighting for you. Precious baby boy.

+ Read More

$19,279 of $15,000 goal

Raised by 327 people in 13 months
No Longer Accepting Donations
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Created January 17, 2017
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KP
$100
Kim Ponsky
12 months ago
1
1

I hope he can get the treatment needed to live a healthy, happy & pain free life... no baby should have to know this pain. My heart breaks for you.

JW
$250
J Wolfe
12 months ago
2
2
RM
$25
Rosslyn Mays
12 months ago

Praying for my little cousin love you baby

$25
Anonymous
12 months ago
1
1
MP
$10
Marlaina Pasour
12 months ago

Sorry that this precious baby is going through this hope this helps

$10
Anonymous
12 months ago
$100
Anonymous
12 months ago
CH
$100
Cheryl HUton-Law
12 months ago
1
1

Referred by Janet Meeks of Bedford Hts, Ohio

Charlotte Jones
13 months ago
5
5

I just want to thank you ALL for opening up your HEART. NOT many responding to my page. BUT AGAIN THANK YOU ALL AND GOD BLESS YOU

+ Read More
Pope Regina
13 months ago
4
4

I WANT TO PERSONALLY THANK EACH AND EVERY ONE OF YOU ALL NO MATTER HOW GREAT OR SMALL, YOU GAVE OF YOUR HEART, PRAYERS AND YOUR MONEY.. THANK YOU AND AND MY PRAYER THAT GOD WILL BLESS YOU EXCEEDINGLY, ABUNDANTLY ABOUT ALL THAT CAN THINK OR ASK IN JESUS NAME AMEN

+ Read More
Danajsha Swaggin
13 months ago
4
4

Thank. You All for You're support and prayers. God wrap your arms around Our preciou children and my Grandchild. Ease their hearts, You are Able.

+ Read More
Lacey Marie Yantis
13 months ago
4
4

Hi I am a local EB mom in Seattle. Please feel free to reach out to me for anything you may need. I also worked in the pediatric hospital setting.

+ Read More
Tanesha Ealom
13 months ago
4
4

I want to thank you all who's sharing and continually reposting the link for my great nephew I want to thank all you who has gave funds to help my niece and nephew please continue to spread the word please continue to repost please tell everyone you know that would take the time to listen and help our family we need all the help and support you all can give. Thank you so much.

+ Read More
Carla Walcott
13 months ago
4
4

Grace on Wings is a non-profit air medical ambulance, they have a Facebook page. I hope this helps, be blessed !!!

+ Read More
Jennifer Edling
13 months ago
2
2

I'm so sorry that your son (and your family!) has to go through this trial. I am the mother of a 7 year old boy with Junctional Herlitz EB and I remember all too well the pain and fear of having a new baby diagnosed with EB. If you ever need someone to talk to or have any questions, please feel free to ask. There are EB support groups on Facebook as well that you can use as a resource. I also have a guide for hospital personnel to help with hospital cares (ECG leads, temps, blood pressure, xrays, ultrasounds, CAT scans, respiratory care, etc). Sadly, we had to learn the tricks after making many mistakes. I'd love to send it to you guys to see if any of it could be useful for your son as well. My family and I will be praying for you all! {HUGS}

+ Read More
Jessica Green
13 months ago
2
2

Hi! I'm a local EB mom, my phone number was given to you by a nurse, please call or text. I'd be more than happy to help any way I can. My daughter is almost 7 and has JEB.

+ Read More
Blackstarr Starr
13 months ago
1
1

I would like to take the time to thank everyone that personally donated to my great nephew's progress. It's a blessing to see so many people share money and prayer. This is a long journey for The family and my nephew so these donations will be used for so much. We take so many things for granted but God constantly show us that he is a great God. Love you all and many blessings! Peace.

+ Read More
Jessica Schaefer
13 months ago
1
1

My prayers are with all of you as Kahleel fights this absolutely horrific condition. I'm unable to donate money right now, but have shared his page on my Facebook and Twitter profiles. I send you my love and hugs and will pray Kahleel gets the treatment he needs, and for the strength you all will need to fight EB! Kahleel was born on my birthday, and I'm thrilled to get to share it with such a beautiful and brave little boy! :) May God bless you all!!!

+ Read More
Angela Murley
13 months ago
1
1

Your family will be in my nightly prayers!!! May God Bless you with a treatment and cure. ❤

+ Read More
Catrina Whitman
13 months ago
1
1

Try and Look into angel med flight.

+ Read More
Lene Maxwell
13 months ago
1
1

I am so so very sorry. Are you in contact with the EB organization "Debra"? My sincere thoughts are with all of you.

+ Read More
Kadyem Clark
13 months ago
1
1

Thank you everybody for your donations everything done is a step closer. Thank y'all so much words couldn't explain the pain we're in. Thank you for the support and last but not least F*@k EB

+ Read More
Kadyem Clark
13 months ago

Thank You for everybody whether you donated or not at this point no amount of money could ease the pain my son, my wife and I are in. All I ask is please keep us in your prayers during these dark times. He recently was diagnosed with Junctional Epidermolysis Bullosa the Hertlitz form. Please advocate and keep spreading the words of these diseases out here in the world. Sorry to everyone that lost someone to this terrible disease let's all work together to spread awareness. #BeatEB #KahleelCampaign. Once again thank you to everyone who supported us during the dark grey times. Thank I couldn't say it enough....

+ Read More
Abbey Wright
10 months ago

I am lifting up this sweet little boy in prayer as well as all of his family especially his dad & mom. I hope ur able to get him to the correct hospital & that all the money comes together. I also pray that ur son is healed. I believe in miracles & I am asking the lord to do one for ur son

+ Read More
Mesie Lee
12 months ago

I want to thank so many of you who choose not to used your card but so willingly sent donation to help my great-grand son Kahleel.

+ Read More
Mesie Lee
13 months ago

We want to thank everyone who is praying for our grandson-great grandson Kahleel , also for the donations given on his behalf. We still believe in miracles, also pray for strength for his mother and father. God bless. Artemesie B Lee, Marlon Lee.

+ Read More
Tanesha Ealom
13 months ago

Waiting to breathe again Every little breath I take I wonder how life can be so cruel How it's able to pick and choose How we live Our life To come out the wound Suffering Depending on others Even strangers to help make a move Hoping they take their precious time To listen Lend and ear Help what they can bare Stop the shedding tears Heal the hearts that has been struck With fear The hard decisions we have to make Becomes clearer Matter of fact near To the point the facts of life is dear So dear to us we began to gain fear That we try everything in our power To gear up Pulling out all types of armor To shield us from harm Yet I'm just waiting to breathe again To be able to enjoy life This world might have to offer Yet I have to wait Wait for you all to make an decision To move for me So I can breathe again So I can smile With laughter With the touch and the kisses of my parents I so yearn for But see I can't speak They have to speak for me These tiny little hands Want to grab my daddy ears And squeeze my mommy fat cheeks To see her smile and speak at the warmth of my touch My mother my queen Is holding on strong This fight is not yours but ours But blessings is needed You see I'm just waiting to be able to breathe again Tell me Is that asking for much?? Give me a chance to breathe the breath I yearn to breathe #Kahleel Beauty‍♀️

+ Read More
Lene Maxwell
13 months ago

Aww little guy. My heart breaks for you. Sending you love. May you feel comforted. And may your parents gain strength to keep fighting for you. Precious baby boy.

+ Read More
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