Thursday, December 31, 2009

Nicky & EB. What it is, how he's doing.

We're at the dawn of a new decade and there are quite a few family and friends, including some I've reconnected with recently, or within the past couple of years who are not sure what Nicky has or what's going on with his health, so I figured I'd clue everyone in because in the coming years I will need your support more than ever.

In a nutshell, Nicky was born with a skin disorder that falls under the umbrella of skin diseases by the name Epidermolysis Bullosa, a fancy Latin term meaning Blistering of the Epidermis. There are three main forms of EB, Nicky has the Dystrophic form, the form that makes the deepest wound-a wound that travels down to the dermis, also similar to 2nd degree burn-like wounds. His form is officially called 'Recessive Dystrophic' because the gene that causes the condition is a gene that is generally recessive, people can be carriers but cannot have the condition unless two recessive genes are inherited, one from each parent, in which case one is forced to become dominant. This is why RDEB is so rare, one in a million! So, when I say my angel is a one in a million, I truly mean it!

At any rate... I will not bore you with the trials and tribulations we've been trough the past 13 years, insurance companies denying bandages, delaying surgeries, wondering 'why' I needed to take Nicky to a specialist and the list goes on, and on... And on! Needless to say I've learned to dislike the current Health Care system in this country quite a lot and as you can imagine I am in full support of reform. I wrote all about our experiences in my book 'Special Mommy Chronicles', available at Amazon ;-). I am writing a quite intense book about Nicky's life as we speak, but since I want to include a cure in there (thinking positive, I want a happy ending) it will be a while before I finish that one, but, I digress.

I always get the question if Nicky's getting better. Well, the answer is yes and no. Yes because his general skin, the skin that is in areas that rarely blister is quite tougher than it was when he was a baby. Unfortunately the areas of constant rubbing or with joints, such as knees, armpits, elbows, wrists and ankles are a disaster to put it mildly. His knees have been open wounds since he was one year old. He itches uncontrollably, is in a lot of pain, and his bandages need to be changed very often. Nicky has a g-tube, meaning he gets his nutrition via a tube in his stomach, I give him about 4 cans of Nutren 1.5 & 2.0 overnight and he drinks and eats mushy stuff during the day. His esophagus is compromised and blisters and shrinks so he has to be careful. Every so often I have to take him to Stanford to get his throat enlarged. He also gets iron/blood infusions once or twice a month at CHLA (Children's Hospital of Los Angeles). His fingers and toes web and contract, and he's in a wheelchair/powerchair when we have to go anywhere because no matter how much I pad his feet, they hurt to walk on them much.

When Nicky was born in 1996 there was NOBODY looking for a cure. There was absolutely nothing going on. Zero, Zilch. It's only been since the late 90s that things started happening. Stanford was looking into skin grafts (which they still are, ten years later), Italy (yes, Italy!) started working on gene therapy (not sure what that means, I am assuming also skin grafts). I remember having many long talks with Lynn Anderson, the wonderful woman who started the EBMRF because she wanted a cure for EB so badly (two of her children died from EB) and it was apparent to me a cure would take many, many years. The problem with children with RDEB is that time is not their friend. Children can die anytime from infections, and as they grow older and in their teen years they have to worry about skin cancer and the problems with malnutrition, which Nicky does not have thanks to his g-tube. I only know of a couple of patients that are over 40 right now, maybe a couple in their 30s. While I know Nicky's health is good overall at this moment, the unknown is constantly at the doorstep and something I rather not think about and I rather concentrate on a happier future for my boy. I KNOW it can happen. Hope it's my big motivator. I had to step away from being part of support groups because I could not handle hearing of anymore children dying, which was something I would hear constantly. It turned me into an angry person and I did not like who I was becoming. I am in a much better place now. As you may surmise, knowing other children (in many cases younger!) with the SAME condition would constantly die it's an extremely hard piece of news to take. As many of you know, I buried my first baby, Alex, who was stillborn at full term, and the pain I felt it's the worse feeling in the world bar none and I never want to feel that way again.

Three years ago an amazing EB mom, who had done a thesis on Bone Marrow Transplants started wondering why BMTs were never tried on children with EB. She got together with a Dr in Minnesota who headed a BMT unit and they started working things out. Since then several children have done the transplant, all with a sibling match donor (which Nicky does not have-Connor, since he has a different dad, is not more likely to be a match than the general population) but in 2010 they will be starting transplants with EB children that will require a Bone Marrow Donor or a Cord Blood Donor so we'll be eagerly awaiting to see what happens. It's important to note that while the children that have done the BMT are not cured overnight. The BMT is a long and tedious procedure and it takes time to see an improvement. The longest it's been since the transplant, the better the patient is.

I strongly believe that things happen for a reason, so I've taken it as a sign that now I could not manage to take Nicky to have his transplant because of my husband's stroke. It will be a year before he's better and I can leave him for a few months to go do this. This year will be crucial to see what we decide to do because many things are going on. Not only we'll see what happens in Minnesota, but we know that they started BMTs with reduced intensity in New York at Columbia University which might be a much better/easier option with Nicky if they work. I also know that they've made some strides in Italy and they stated in their National Telethon this month that they will have gene therapy within the next couple of years...and we wouldn't mind being stuck in Italy for a few months, ya know? We'll be with family rather than alone in the middle of the US.  I am still a citizen and I can make Nicky a citizen anytime I wish.

We are also keeping an eye on Stanford. The EBMRF (which funds EB research at Stanford) was able to get many celebrities involved in their fundraising. Last year with Oprah's Big Give they were able to raise several million dollars, and by having Courtney Cox as their spokesperson they ensured many other celebrities being involved, such as the Arquettes, Jennifer Aniston, Eva Longoria, Brad PItt and others. Their fundraisers are always celebrity studded and they have been bringing us much needed awareness. Stanford, as I hear, is close to getting FDA approval on their genetically 'cured' skin grafts so we're keeping an eye on what's going on with that. The way I understand it, they would take a skin sample from the patient, genetically alter it in vitro and then grow enough to cover areas such as knees, ankles etc. As I hear this is still a couple of years away at best.

I am still leaning toward a BMT all things considered-I know this is a risky procedure, but skin grafts would only heal that part of the body, they would not cure anything related with his esophagus and he'll still have EB, while a BMT, even if it might take years to completely take, would ensure an overall treatment. Even if this meant in the end he would only be 'cured' 50% overall, this would be FANTASTIC in our book.

This is however, a hard decision to make because we would be away for nearly 5 months. Connor won't be able to go with us at least at first, and even if I know we could stay at the Ronald McDonald's House, that's still $15 a day plus food. This does not include co-pays which I hear are going to be astronomical. Hence... We are not looking into a few thousand dollars, we're looking at needing to raise somewhere between $25-100k. We do not have this kind of cash, so before we go we'll need to figure out how we'll manage this. Anyone have any ideas?

Thank you everyone for your continuous support. Your love and light means more to me than you'll ever know.

Silvia and Family
P.S. I read this to Nicky and he gave me his thumbs up. ;-)

Tuesday, December 29, 2009

Please vote for my video!

it's the first video on the top left corner w/ words 'imagine'
Thank you so much!!!

Monday, December 28, 2009

Greg Update December 28th 2009

It's been a little while since I last updated and I have a few minutes so I thought I'd catch everyone up with how Greg is doing, since we constantly get asked.

First and foremost, I must say, the improvements are there but are extremely slow and hard if not impossible to see day by day. It's only after a couple of months that I realize that he used to do something slower or not at all. For example, his walk used to be very, very slow and now he can make it to the alarm box within the 30 seconds from the front door. Granted, the front door is not very far from the front door, but 30 seconds would have been impossible 2 months ago. He does use his leg brace when he goes to work but around the house he goes solo. He's even not always using his walker which is amazing, it depends on how tired he gets.

We had a long talk about how quickly he gets tired the other day. I was worried because on the 3 mornings I work per week he has to be up and showered by the time I leave (8:30am) because I have to help him get dressed. There is no time to do that when I get back home because is a 'Hi and Bye' and he's out the door. On those days he gets extremely tired, but I am glad that it's only going to be for 3 mornings per week until I go back to school, and thankfully that won't be until the second week in February. Hopefully by then he'll be a little better.

Going back to work I can tell has made a big difference in his spirits. A friend from work gives him a ride to and from the base. Before he starts working for the day (at his temporary desk position until he gets better) he hits the gym and works out his leg and arm.

His arm seems to be the one thing that is dragging. We do semi-daily arm excercises and he works it out at the gym, but there isn't a whole lot of improvement to report. The doctor told us that his arm would be the slowest to get back and his hand the last (for his fine motor skills). Books and Doctors have told us that it would take anywhere between 6-24 months to get everything back so as long as we/he keeps up with his exercises he should ever so slowly improve.

Having said that he's taken it upon himself to do as many things by himself a possible. He's mastered the dishwasher and Connor is a wonderful help with that. He tries to take out the trash and Connor once again helps his daddy. The Physical Therapist told me to only do things for him when it's clear he can't do them himself, so he's tried to do as much as he can on his own. When Greg is home in the evening (Greg does not usually get home from work until midnight) Connor snuggles with his daddy and they go to sleep together. They are so cute I let them be and I go sleep in Connor's car bed, LOL.

Thank you everyone for the kind thoughts. This was a hard Christmas for Greg due to his mom passing (sigh) and the stroke has made him very emotional. We can't wait for 2009 to be over with. I've already got the Spumante! And the Panettone, of course. I am Italian, I love the stuff. Good riddance '09!!!

Hugs and Kisses!!!

Silvia & Co.

Saturday, December 12, 2009

Epidermolysis Bullosa Awareness Incredimail Letter

Here's a letter I made a while ago and never uploaded to the site... it's FREE and you can download it here...


More EB Awareness Incredimail letters are available at this link:

Clearly I haven't updated this page on the website in a while... how embarassing! :-( That's what happens when my plate overflows. My apologies. The website is on my short list of things to do before Spring Semester starts in February!!


Sunday, December 06, 2009

Where to get info about Marybeth & Samantha

My friend Marybeth and her daughter Samantha (with EB like Nicky) were recently featured on the Discovery Health Channel show called "Truth Be Told - I Have A Child With Special Needs".

You can follow Samantha Sheridan's Bone Marrow Transplant Journey if you go to

All you have to do is register with a user name and password; once you get that just go to "visit a web site" and put in samanthasheridan just like that, all lower case, and all together as one word.
Sam's mom have been keeping a journal of their progress.

Sunday, November 22, 2009

Free Bon Jovi Wallpaper

Okay, I did this as part of a class project I am still working on, but I thought it would make a cool wallpaper, so, here it is. It's 1600 x 1200 full size.




Friday, November 20, 2009

Greg/Nicky update 11/20/09 (LONG, sorry!!!)

Today is Friday, and poor Nicky is still miserable from a DOUBLE corneal abrasion. Actually, I should re-phrase that and call it something else entirely, sorry. His eyes are OK. The insides of both his eyelids are not. I know, weird. When he was little he had a TON of problems with his eyes, a very small scratch would make his eye red and painful to light, so much so he wouldn't open his eyes for days. He would sit in his room under the blanket with the room all dark. Now, and for the past several years, when he finally opens his eyes (which is only a few hours later, albeit still painful to light), his eyes look perfect, not a red streak anywhere, while the eyelids look all puffy, red and purple, with matter oozing out. There is no question that during the night he rubs his eyes and voila'. Sigh. We keep this from happening by using soft (very soft!) mittens on his hands at night, but during the winter when the heater is on we have to use the humidifier as well, and I forgot to turn it on the other night. Sigh. I blame myself, although in the past, even with the humidifier and mittens are on, occasionally this still happened. I *hate* EB. I can't say that enough.

Anyway... he'll deal with this for another couple of days and then he'll get better for sure. So upsetting since he seemed to be doing so good lately.

OK, on to Greg. He fell a couple of times recently on the same hip, and at first it didn't hurt too bad, but 2 nights ago he rolled over on that hip and it started hurting so bad he didn't sleep at all last night and I had to give him Tylenol w/codeine to ease his pain. Like trying to recover from a stroke is not enough! We have an appt on Monday in the event the pain does not go away. There is no bruise and externally you can't see anything, but if the pain does not go away there is a possibility of a fracture, so we've got to be careful about that. He was making good progress but now it's too painful for him to do any of his exercises, so it's all a bit discouraging. He's still supposed to go back to work in 3 weeks? We'll see I guess.

I must admit, for me, this is a bit too much. Connor is still too young to be independent and needs me so much and I get frustrated not only because it's hard to see your family in pain and needing you so much, but also because it's all a bit too much for my brain to comprehend everything that needs to be done. I make lists and lists and lists and I always forget something. Always. I go halfway across the house and then I forget what I am supposed to get/do. I can't remember the last time I was able to watch any TV show without interruptions. I am thankful I am forced to go to 'lab' for my computer classes at the college so I can dedicate myself to my schoolwork because there is no way I could do that at home. On most days I think I am okay, I try to stay positive and who cares if there is a ton of laundry to do and dishes are piling up in the sink, but there are times like this morning when all I want to do is curl up and cry. I have to sit and watch family members who have healthy kids and healthy spouses get constant help, who have parents or siblings nearby, or extended family members able to come and help when there is no "real" need. I had a good cry watching 'Desperate Housewives' a few weeks ago, when Susan's daughter was in the hospital, everyone was bringing her food. I spent oodles of time in the hospital, and nobody brought me food. I lost 5lb in one week. I have no close friends or family here and that's just how it goes. My choice I suppose, or just how things worked out. Something we call life.

Oh well, thank you for listening me vent. I am okay, really, just know that if you come to visit, come to visit us, not the house, OKAY? LOL. Not that anyone ever comes to visit anyway.

On to more fun stuff. Tomorrow sometime I will upload my college class INDESIGN project (basically a 6 page brochure full of pictures) about Ivrea's Carnival, my hometown famous carnival which features the biggest food fight in the world, the Battle of the Oranges. It came our really cool, so I hope I get some feedback. :-)

Next week is Nicky's 13th birthday, as usual we'll celebrate it on Thanksgiving. My boy a teenager? Hard to believe. I am going back to work on December 7th, to the holiday rush no less! It's actually good, it will keep me busy and my mind off stuff. School is over on December 12th and then I won't go back until February. I am looking forward to that.

Silvia and the Gang

Sunday, November 15, 2009

Free Animated Dolly Letter

Here's one of my new Incredimail letters I made this past week for members of my Incredimail group. Here's the link if anyone would like to join!



Monday, November 09, 2009

Free Bon Jovi Incredimail Letter

Here's one of my new Incredimail letters I made this past week for BON JOVI fans! Their new album drops on TUESDAY!!! Whoo-eee!!!


I have a lot of FREE incredimail letters on my website here:

I have over 800 letters that are NOT on the website which I am working to make available soon, stay tuned!


Saturday, November 07, 2009

Greg Update November 7th 2009

Greg had the first official outpatient Occupational therapist appointment this week. While he's making progress with his leg because he's forced to use his leg if he wants to get around (and the excercise bike also helps), his arm is another story entirely. We decided that the Therapist should solely concentrate on his arm to get the most out of it. The OT says that he must try to involve his left arm and hand in everything he does and gave Greg some excercises to do daily. He also has several excercises that he does for his leg on a daily basis. He told me he has noticed some muscle tone coming back on his leg and I see some slight improvement on his arm. He told me that today for his first time he could put his hand in his pocket easily, before it was a challenge. The OT will continue most likely for at least 2 months, once a week, and he's also getting bloodwork done weekly to check for a few things, but most importantly for the cumadin levels, as to keep his blood at the right concentration, not too thin, not too thick.

His cholesterol check came back and his numbers are great! He went from 250 to 165! That's amazing in just one month. Then again, I am cooking, so he's pretty much stuck with what I am serve, which is only white meat, veggies, fruit, pasta, bread and low fat stuff. I know how important nutrition is, and I've been working at it all my life. I get my #s drawn every year and they have never been out of the normal range. I think that while he's always worked hard at staying healthy, he might have overdone the red meat thing. That, plus a little dose of bad luck, since scans show he has no blockeage anywhere else, brain or heart. He's lost 20lb since the stroke and I personally think he looks amazing. He got his new laptop and he's loving it.

Greg plans to go back to work in early to mid-december and I think he'll be able to do it. That's when my leave ends as well. By then my classes will be over for the semester and the spring semester won't start until early February. This means I won't go back to have a FULL schedule until then, which I think is plenty of time to make sure I am here as much as possible to assist in his recovery. At work Greg at first will be doing paperwork or study until he gets stronger. They have been wonderful and very helpful. One of his co-workers told him he can ride with him to work. Greg can drive since his right hand and foot are good, but we want to wait until he's stronger to do that as well!

Not sure if I will update again real soon, most likely in a couple of weeks if there is significant improvement or news.


Monday, November 02, 2009

Official Blog... here from now on.

My official BLOG will be here from now on. This will be a mix of my life plus some scrapbooking/incredimail freebies thrown here and there.

This past month has been difficult to say the least, after Greg's stroke I had a mini-nervous breakdown. It wasn't pretty. I somewhat recovered, but it's going to take some time. I don't like that side of me when I have meltdowns, thankfully I see it very rarely. Greg is improving daily, his spirits are up and I hope the Phisical Therapist will be of some real help.

Nicky had his surgery and as of today he's fully healed. He can eat a lot more. He's been able to eat some Halloween candy, which is a first! Imagine that. I am still trying to get this darn transplant going. My last challenge is to locate the dermatologist that originally requested the diagnose, those records are who knows where and they are badly needed. We'll see how that goes.

Connor is my angel. He had a bad infection in his mouth but it's healing so I am happy about that. I hope he won't be too behind in school.

As per moi, my LOA ends in early december. This semester, which flew compared to the Spring semester, is going on fairly smoothly. Next semester I am hoping to be able to take math and photography or photoshop along with a history class of some sort or art appreciation. All required for my degree. Registration is November 20th.

I will still write updates in FB, but I wanted to make sure to use this as well.


Monday, February 09, 2009

My Blog

I had some asking if I keep a 'blog' per se where I talk about my life with my son with EB etcetera... I do, but I don't post often, I just don't have the time anymore. However, since I've kept this blog for the past 3 years, it does go back that whole time and I do have written tons in the past.

Here's the link:

I am also on Facebook, I am there more than myspace as of late. Just look for Silvia Corradin... there are 4 of us, but I am the only one that lives in Los Angeles...

Hugs and Happy V-day!

Wednesday, February 04, 2009

*NEW* Freebie ALLBOY WordArt/Elements

This is a preview of the Freebie... it's a 3600x3600 PNG file at 300DPI. DOWNLOAD HERE!


Thursday, January 29, 2009

Freebie "Birthday" WordArt

Hello friends! A couple of new word arts for you today... hope you like!
Leave some love... here's the link!

Thursday, January 22, 2009

Freebie 'Sister' WordArt

Here's a new Freebie for you today, I made this for a scrap-page I made with my sisters...

Tuesday, January 13, 2009

Hello everyone!!

Well, in honor of the American Idol Premiere tonight (whoo-hoo!!) I figured I'd make sure ALL of my Free American Idol INCREDIMAIL letters were on the website, so I added the 3 that weren't on there. I will start updating the main website again soon, I have over 300 letters that are not on there, so I've got my work cut out for me, LOL!!

Here's the link!

Matching Blank Tags are here:

Simply 'click' on the letter that you want and it will automatically download in your style box.

As I update other parts of my website I will post the link!

Here's the three new letters! There are now 143 American Idol themed letters on the website now!

Monday, January 12, 2009

Hello friends!

Long time no new stuff. Today I will start by having a new wordart freebie once a week! I hope you like it!

Here's the Preview:

This is a PNG file 3600 x3600 at 300dpi