The Boy Whose Skin Grows Too Fast

The Boy Whose Skin Grows Too Fast


DEDE FASCIANO: Harlequin Ichthyosis is a severe skin disorder. It is a genetic disorder that’s
inherited at birth. For Evan, it is the most severe form of Ichthyosis. Dede: Time to cozy snuggly? Evan: Yeah and put my sweater!
Dede: You want to put your sweater on? JOE FASCIANO: It is a condition that affects his skin and it makes it very, very thick and scaly. DEDE FASCIANO: Ever since Evan has been born
we, you know, knew right away that there was no cure and there were only treatments. COMM: Delivered nine weeks early, Evan Fasciano spent his first 58 days in hospital. DEDE FASCIANO: Evan was diagnosed two days prior to birth. We have never heard of Ichthyosis
prior to hearing it from the doctors before he was born. It was hard because we really
didn’t know what to expect and it was scary just hearing the information that was available
at that time, in 2010. Hearing that a lot of babies might not survive, I remember looking
at him though he was covered up, it was just a relief for me to see his tummy go up and
down. COMM: Evan is the only one in his family who suffers from Ichthyosis. COMM: There’s no cure for the condition, so Evan follows a strict regime to manage
its symptoms. DEDE FASCIANO: The bathing process is really important for people with Ichthyosis because
their skin is growing ten times faster than the average person. We bathe him because we
need to exfoliate his skin; we need to make sure his skin stays clean, since his skin
is at risk of infection, everything has to be very clean and sanitary. The amount of
skin that comes off is absolutely crazy! Since his skin is so severely dry, he needs to be
coated with an emollient to prevent it from cracking or ripping. And it’s a, more of
a protective barrier. He’s usually very happy and giggly when he gets Aquaphor. Okay,
arms up high in the sky! Okay, can you stay still please? You’re being silly. He can’t
sweat so he can overheat very easily, he can go into heat stroke very easily, he can
have seizures. We’re constantly pushing fluids, drinks, food as much as we can. Just
to keep him up on the calorie intake. We were always a little bit nervous that we would
have to get a feeding tube just because of the infection risk with surgery. He rarely
complains about anything! COMM: Evan’s condition can draw unwanted attention. JOE FASCIANO: There’s been instances where people have made bad comments and you do your
best to stay positive. DEDE FASCIANO: We would never want Evan to
feel uncomfortable going out in public. He does sometimes seem to be a little shy when
he notices people staring at him, I don’t want him to react negatively. I would rather
live a positive lifestyle and not let some stranger who was being rude ruin his day. COMM: Evan is happily settled in pre-school. DEDE FASCIANO: He’s pretty much known as
the rockstar in his school. Everybody waves to him; he literally doesn’t put his hand
down when he’s walking in the hallway. I’ve gone to his school quite a few times to teach
the students about Ichthyosis, just that they are curious about what’s going on with his
skin and every time I go in there he is right up in the front row, you know, helping me
teach the other students. COMM: And Evan’s parents hope that he will continue to lead a happy life. JOE FASCIANO: I want Evan to be somebody that people can look up to. Somebody that people
can say, “Wow, he’s got a lot of challenges, his appearance isn’t the same but he can
teach people a lot of things and he can differently be a big positive influence for a lot of people
with similar disorders.”

100 Comments

  1. God, bless him and his parents. I don't even know how I'd manage doing all this for a child plus my own job or whatever else I had going on for myself. It'd be way too much stress and worry for not only me, but the child as well. I hope him and his family stays healthy because despite the stress, they still manage to keep up with everything. What an inspiring feat, this makes my day. 🙂

  2. Why anyone would make a negative comment about Evan is incomprehensible to me. Why they would say it so he and his parents could hear it is inexcusable. Evan you are an adorable rock star! Props to Mom and Dad for raising him in such a positive environment.

  3. when i saw this video i said i dont under stand its just a child and then i looked then i said oh i am sorry i did not expect that 🙁 hope you be better in the future

  4. Not trying to be rube but sense there is more skin there is more blood so at the end he looked like thanos

  5. I admire how dedicated and positive the parents are. He seems very happy and loved. I love that he is having a positive school experience. I work at an elementary school and find that children are so very excepting of others differences, unlike most adults. He will have a wonderful support system with them. His peers at school will also be blessed by him as they will learn compassion much sooner.

  6. Who in the hell thumbs down this video! Man this world is full of sick people , u cant even know your fellow neighbor anymore ! God bless this family and that little boy. My heart and prayers go out to u all. U have such an amazing little boy there .

  7. To be honest he’s not adorable but the moment of him on the slide is actually really cute to me bc he smiled and he put his hand together I think that moment he’s just very cute just like the other baby but to be honest not lying he’s not adorable as the other kids but his mind and personality is definitely stronger and prettier than the other kids! God Bless U! ❤️

  8. He reminds me of a character on a anime i use to watch called samurai x theres character who is simular cuz he cant sweat probably why the kids rarely complains probably never gets mad either cuz it does nothing for him to get worked up an upset cuz he cant cool down by sweating like most can character is name shishio

  9. Just look at these heartwarming comments… and there is still abuse around the world… we need more heartwarming comments and tell them to abusive people!

  10. Het Evan. Jesus loves you and your wonderful loving parents. Seek out a great Christian Church for support and to learn that God has a plan for Even and his family. God bless!

  11. God bless all of these kids that are going through these type of conditions 🙏🏾❤️ Regardless, they are beautiful in his eyes ❤️💯

  12. If i had skin like that I would be scared to go to school because people will bully you/ but I would feel great

  13. I think, Allah is taking examination from you to give you such a child.and i hope allah give u the best prize in the day of judgement….👍👍👍

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