Teen with rare skin disease shares his touching story
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- čas přidán 18. 07. 2017
- Teenager John Hudson Dilgen, a Staten Island resident living with epidermolysys bullosa, was recently featured in a video by Special Books by Special Kids. (Video footage provided by Special Books by Special Kids)
I wish I could get to know John. He is an amazing young man and I admire him so much. He could teach me a lot. I have seen stories about him on TV and other places and I am just in awe at his courage, his strength and his love for his parents. God bless this young man and bless his parents.
I hope soon they find a way to help you live without pain. I'm sending you and your family fraternal love from Belgium.🌻
You are amazing, John ! Thank you for sharing your story. We are with you 💕. God bless you.
I just want to be around him he is amazing. And mom, omg! You are strong! I don’t even know what to say!!! Sending hugs and kisses to you both😘😘
The greatest boy ever! Regards
u r an inspiration John, keep smiling
Hi I love your videos it makes me cry I want hug you pray for God bless you
I just found your site and subscribed . You are an unbelievably STRONG young man! 💪💪💪
John, I watched your story last night on CZcams and let me just say this, You are a very brave outstanding young man, that absolutely broke my heart as I watched your story. I am a 70 year old man that has had many experiences in my life but nothing has ever affected me like your story. I am a retired MSgt/1st Sgt with the USAF, a Vietnam War Veteran, a 26 year retiree with the Arkansas State Police, a retired Cleveland County Judge and currently serve as Mayor of Rison, Arkansas. I also have the privilege of being the Trainer for the eight time state Champion Football team the Rison Wildcats. I take care of the boys on the sideline with injuries and anything else they need. I will forward a picture of three state championship rings the teams won and they got me one as well. Son, you are indeed a brave and courageous young man. I really wish I had the opportunity to meet you and visit but perhaps we can communicate through this medium. John I am a large man, I am 6'5" and weigh 275 lbs. which came in handy with being a highway patrolman. John I am going to give you my home address as well as my email address, I would love to talk with you, if at all possible. I am no body special but I have had many experiences in my life I would really like to share with you. I am going to let you in on some of the things that have happen in my life. I even have some various artifacts from these experiences that I would love for you to have. In 1976 I was Johnny Cash bodyguard for a day. Johnny was originally from Cleveland County and he returned for a special concert. I have had President Bill Clinton in my patrol car many times. When he was governor and would come to south Arkansas I was always the one to drive him around. Mr. Clinton are both originally from Hot Springs, Arkansas. John in these troubled times with the pandemic be careful around anyone. I know your parents and sister are extremely proud of you and I do understand why. You are indeed a blessing and I hope we can communicate, John you will always have a special place in my heart and so you know I pray for you daily. I am also the past Youth Director of Rison Baptist Church. If you want or need something, please tell me, I know many people that will help get what you want. Until later God Bless and I pray your pain would go away. My address is: Vernon Dollar, P.O. Box 153, Rison, AR 71665 my email is: judgevern2003@yahoo.com. John I look forward to visiting with you through this media.
Did he ever contact you? Maybe try contacting SBSK or John's Facebook
Huuge respect! Keep your head up!
Looking at the pain it this young, sweet boys eyes in some videos just seared into my soul. I love his sweet persona and kind heart!
You are Graced with an amazing loving family young fella
Greetings from czech rep, i want to have conversation with you, youre great and strong man!!!
You are just amazing. God bless you dear and give you strength to overcome all this.
He is truly such an amazing young man❤️❤️
Happy 20th Birthday John.
God Bless.
I think you are perfect just the way you are.
I’m sharing my life here as I have Epidermolysis Bullosa Simplex. It’s ‘simplex’ because mine is the type one. I can still walk and live a normal life. But things do get a little hard. But seriously nothing compared to him.
Type one is where when there is a lot friction, my skin will get too soft and will be filled with plasma. It makes it really hard to walk if that happens. It’s like carrying a water balloon on your skin that has a stinging feeling.
This happens when I wear tight shoes, wear tight pants and my sleeves. And I also have a little symptoms of type two which is blister in my mouth like my tongue and throat.
This is genetic but in my family, I’m the second one to carry it as my dad got it from nowhere. They didn’t know that it was genetic. They didn’t even know the name of it. My parents only went to a lot of doctors and finally found out about it as I started getting it around the place where they wrap the baby with napkin. And nowadays as a girl I get blister pain around the place I wear pad.
There is still no cure for it. And there is a high chance for me to actually get stomach cancer if I eat things too spicy. So well... this is my life. Being a type one EB patient. The only thing I can do now is to get used to it and poke the blister with clean needle and take the plasma out.
I also did feel outcasted a bit in my primary school years because I was different. But now people understand me.
And for those who read it all the way here, thanks！
Thank you for sharing your story! I hope you have all you need to live as comfortable as possible, as pain free as possible. Fraternal, gentle cyberhug from Belgium.🌻
Hope you are doing well
we are all here for you
Fico muito feliz de ver essa mamãe tão carinhosa com seu filho ❤️😍
I feel so sad
God help you John...we pray for you and all children like you ! amin
What's the update with him? I think about him almost every day and I hope he's doing ok
Nella speranza che la scienza, la ricerca e la medicina possano trovare soluzioni efficaci per questo tipo di malattia allucinante, abbraccio virtualmente questo splendido e coraggioso ragazzo, sperando che la sofferenza e la malattia possano essere un ricordo lontano...🍀💫💙
🙏🙏❤
I hope what I'm about to say may be help in some way. New Zealand has natural sulfur mud baths which have healed quite a few skin disorders, I don't know if my response will get through to this boys parents but it might be worth a shot for him to at least try this once .
Ugh, cant be healed, its genetic his skin is missing collagen 7.Only if they can put somehow this collagen into his body.
Is he still alive? This is so very sad. :(
He is.
Jahjah seh gwaan run come
Is John homeschooled?
Thyme it's ok my be ☕ ask your doctor it's good and good hani🍯
Never in my life have I felt such shame at myself as I have now seeing this young child, this human, suffer so greatly when I complain that I have to even get up, make my coffee and work. At least I have a decent life, it’s not all rainbows mind ya but it’s damn great compared to his. The little things we take for granted and he faces that every single day! I just can’t stop my tears. I don’t know you John Hudson Jr but I am praying for you and thinking of you daily and I will live life better from now on bc you inspired me. You are handsome, brave, strong, determined, courageous, smart and inspiring and my love goes out to you, your family and nurse! They are all wonderful and I’m so very sorry for the loss of your father last year. With every tribulation you’ve faced you still are triumphant and deservingly so. 🩵🩵
I ok
I absolutely LOVE this kid! I have fibromyalgia and chronic fatigue syndrome and depression. But you have given me such a different outlook. I have just sat around and felt sorry for myself. You give me hope for a better outlook on life. You are an amazing young man John! Prayers and big hugs to you!!
He needs someone to recite the Qur'an to him it's goid four him