Saturday, June 21, 2014
October 30, 2011: Cameron's October Rett Awareness Video
November 3, 2011: Cammy Can Crusade Video
With the help of friend, family and perfect strangers, Cameron made it to every state in 6 weeks and to several countries too! Thank you so much for helping us spread Rett syndrome awareness. Please don't stop now! If you are going to a place she's never been or going to meet someone, please take Cammy Can along, take a photo and send it to us!
Tuesday, June 17, 2014
September 29, 2011: Purple Piggy Party
October is Rett syndrome awareness month. A simple way to support and spread awareness is to paint your toe nails purple. The Corrado cousins all met at Wildwood park for a Purple Piggy Party. My brother even let his daughter, Olivia, paint his toes purple. Several people have posted photos of their freshly purple painted toes on Cammy's Facebook page to show their support. I love the love from my family and friends.
September 20, 2011: Photo shoot and BIG change in Cameron with Rett
Cameron has Rett syndrome. Some days, Rett has Cameron.
Photo shoots with any children is difficult. Photo shoots with a child with special needs is especially tricky. All the visions of you have in your head never come true. You want so badly for the perfect photos, but instead end up crying because it's a nightmare. They don't pose or smile on command. Cameron cannot sit up very long. And when she is, she's concentrating so hard on sitting up that she cannot focus on smiling for the camera.
Can you imagine your SEVEN month old reaching for your 2.5 year old, knocking her down and her not being able to get up on her own? Can you imagine your SEVEN month old crawling over your 2.5 year old and there's absolutely nothing she can do to push her off or defend herself. While one of my favorite photos is of Ryan pushing Cameron over, then looking away quickly to not get caught as Cameron laughs, this is one of the many reasons Cameron cannot be left alone. I fear Ryan will unintentionally hurt her, crawl over her, suffocate her, crush her ribs.
All day Cameron was irritable. She tolerated the hour long photo shoot with grandma C and Papa Joe. I could not figure out why until I put her to bed.
Girls with Rett syndrome have a hand stereotypy. Cameron has been hand mouthing from 12 months on. Her left hand is constantly her in her mouth, causing sores and other issues. She cannot control this. Other girls wring their hands, some girls pull out their hair. Cameron's grandma B has made arm splints for her to prevent the hand mouthing. They are absolutely adorable. There are different prints to go with different outfits. In this photo shoot, she made white ones to blend in with her outfit.
Anyway, Cameron was crabby all day and i could not figure out why. When we got home from the photo shoot, I took off her arm splints and laid her down to watch tv to calm down. She immediately stopped crabbing. A few hours later, I noticed that her hands had not been in her mouth once since I took off the splints. They were wringing instead. Her hand stereotypy has changed!
Today, Rett syndrome had Cameron. She was so frustrated that I could not figure out what was wrong. She couldn't tell me what Rett was doing to her today.
August 13, 2011: Cammy Can Crusade!
CAMMY CAN CRUSADE
We would love you help us see where Cammy Can go!
Print out Cammy Can in color or black and white then decorate her yourself. Take a photo with her in front of a sign that reads your city/state, or a landmark, stadium, college, or take her to a sporting event or maybe with someone famous. In order to spread awareness, if someone asks you what you are doing, tell them who Cammy Can is and that she’s on a mission to reverse Rett! Finally, send me the picture.
We want to see if Cammy Can reach all 50 states, plus some other countries. Our goal is to reach all 50 states by October, Rett Syndrome Awareness Month. However, we don’t want the crusade to end in Oct., get that little girl around the world, doing cool things!
Bonus points will be awarded to any Duke fans who take Cammy Can into the Cameron Indoor Stadium with all the other Cameron Crazies!
August 8, 2011: Dani Lococo Drive for a Cure.
July 30, 2011: First time on a horse. Hippotherapy.
Ryan picked out Cammy's helmet as a gift. It's purple with bunnies on it. Ryan loves bunnies. There were not any with monkeys on it, which are Cameron's favorite animals. Cameron smiled when Ryan gave it to her.
Cameron rode the horse in a few different positions to work on different muscles and coordinations: forward, backward, side-saddle and on her belly.
She did really well for her first session.
Immediately afterwards, Cameron went to Communication therapy with Susan Norwell. Both of these therapies are extremely exhausting for her.
June 23, 2011: Cammy is the IRSF's Featured Angel of the Month
Hi,
my name is Cameron, and I was born on March 10, 2009. My parents had concerns when
I was six months old and did not show interest in transitioning or
crawling. Doctors said “wait and see”
for the next six month. When I was 12 months old, testing continued, and I
began physical, occupational, developmental, and speech therapy. In the
meanwhile, my MRI and blood work all came back normal. By 18 months, I was
still unable to sit, transition, crawl, pull to stand, or walk. I lost my verbal
communication and self-feeding and manipulations skills, and my left hand was
constantly in my mouth. At 20 months, we visited a physiatrist who made a
clinical diagnosis of Rett Syndrome. On
January 7, 2011 at 2:45 pm, my mommy, who was 35 weeks pregnant, received a
call confirming that I had Rett.
My
parents allowed themselves one night to mourn. They woke up the next day and
took action because our family is filled with fighters! The first thing we
decided upon was my nickname Cammy Can. Then, within the next three months, my family
and friends helped me raised over $30,000. My mommy tells people all the time
that I’m the hardest working two-year-old in town!
Each
week I have physical therapy twice, occupational therapy twice, speech therapy
twice, and developmental therapy once, in addition to various other appointments
for my eyes, nutrition, and general health. I just starting spending time with
a very cool lady named Susan Norwell who facilitates communication between
silent angels like me and other people. She helps Rett families show the world
what we already know—that girls with Rett are really smart!
My
little sister, Ryan, is four months old and makes me laugh all of the time.
Some of my favorite moments are spent playing with her. I shower her with kisses
to let her know that her big sister loves her very much. I think it is funny to
watch my parents interact with Ryan. Since living with Rett has always been a
normal way of life in our house, they look at Ryan like she’s an alien when she
does things typical kids do!
I
love being around people, especially my 18 cousins. And, I am so lucky that I get to see all four
of my grandparents on a weekly basis. When I am not working hard in therapies,
I love reading, swimming, listening to music, and swinging. My favorite time of
day is family reading time with my mommy, daddy, and Ryan right before bed. I also
love watching Sesame Street, especially the episode with Ryan Reynolds in The A Team. I wonder if he’ll consider working with
Cookie Monster on filming a segment called C
is for Cammy!
Living
in a world with Rett has been hardest on my parents, but I am as happy as can be
because I do not know anything different. I am always surrounded by love and
support, and I bring immense joy and inspiration to others. What could be more
important than that?!?! My family and I constantly tell people that Rett is
messing with the wrong kid. Cammy Can!
Saturday, June 14, 2014
May 31, 2011: Recap of the IRSF conference in Boston
RETT CONFERENCE IN BOSTON
It was an amazing experience and we wanted to especially thank those who gave us private donations to help us with traveling and medical expenses.
Dick Hoyt was the keynote speaker. There wasn’t a dry eye in the place. He is so inspirational. I think Billy and I were the only ones we knew who he was before though. He basically created the jog stroller and pushed forward with the eye gaze technology for his son. Dick is 69 and Rick is 49. They are still racing. If you don’t know who Team Hoyt is, check them out on YouTube.
Dr. Khwaja is leading the clinical trials in Boston. Phase 1 had 12 girls in it, who were all from the Boston area b/c they had to be at the hospital so often. Phase 2 begins in Oct. They are accepting applications through August. We will submit one even though they already have far more applications than the 40 slots. We have no idea what the criteria is that they are looking for, but they want it to be as homogeneous as possible. And it’s based on a severity score that was pre-determined, but none of us know what it is. We decided that we want Cameron to be part of this if she was chosen and we would do whatever we had to do to get to Boston so frequently. Hopefully they want 2 year olds! During phase 2, half the girls will get the IGF-1 drug and half will get a saline placebo during the first 20 weeks, then there is a 6 week flush out period, then the shots will flip flop. Parents and doctors do not know who has what. You have to be in Boston once a week for the first 3 weeks, then once a month (for 12 hours) after that. He said that ethically, they must stop the trials at any point if it’s deemed dangerous. Conversely, they must ethically stop the trials at any point if it’s having an immensely positive effect and there is no point continuing so they can release it to the masses. Let’s hope the later happens!!!! He made is very clear that this is not to cure Rett, but to reverse symptoms. After phase 1, they have seen some positive results and no adverse affects. They were no allowed to discuss them though. There was a father there who had a girl in phase 1. He said that his daughter could say 2 words now: rainbow and elephant. Those are pretty complex words! That’s pretty amazing. I can’t even imagine!!
Other than hearing about the clinical trials, the best part for us was the communication sessions. It confirmed a lot of things we thought about Cameron (i.e. that she understands everything!) and gave us some useful tips. Now we really have to watch what we say around her! We have to figure out how to ask her questions in the right way b/c she's always trying to communicate with us. Susan Norwell (language expert from Buffalo Grove!) presented and showed videos of her working with girls with Rett. She had never met these girls before. They totally understood everything she was saying and asking. They communicated with her through eye gaze or cards. It's quite remarkable. Now we just need $20K for that eye gaze!!!
It seemed as though girls who were able to walk before the regression phase regained the skill around 2 and the girls like Cam who didn't have the skill to begin with gained it after 3. Three has been the goal in the back of my head this whole time.
We learned that some girls didn't get seizures or "breath holding"/hyperventilate until after 3, so that's something that still could happen. It was good to see some video clips to see the different types of seizures so we would be able to identify it.
Cameron’s "night terrors" are not hurting her. She isn't aware that they are happening. Girls with Rett cannot regulate their bodies like us in the transitions from sleep to awake or vice versa. We may wake up, grab the covers, roll over, go back to sleep, and not remember it in the morning. Cameron can't regulate that awakening period. It was good to know that she's not in any pain or doesn't even know it's happening, but it’s sort of scary to hear and see.
Hippotherapy (horse back riding) is supposed to be an extremely helpful therapy. It strengthens the core muscles. It also helps with muscle memory b/c the walking gait of a horse would imitate ours and in turn help in learning to walk.
That was just a tiny recap. In a couple of weeks, the IRSF website will be updated with informational slides from the conference.
It was so important for us to connect with other parents, share stories, ideas and experiences. Some parents brought their daughters and that was interesting to see more girls at different stages and ages. We are going to do whatever it takes to go each year.
Thank you for all of your support. We are filled with so much hope.
CAMMY CAN!
May 14, 2011: IRSF Chicagoland Strollathon
Thank you so everyone who came out to the IRSF Strollathon and to everyone who donated. We had the largest team and raised the most money.
Thanks to you, we raised over $30,000!
April 13, 2011: Introducing the cutest superhero, CAMMY CAN
Our "CAMMY CAN" logo compliments of Jenn Kim.
Jenn did an amazing job capturing Cammy's personality, inspiration, and determination.
We like to think Cammy is a little super hero
April 10, 2011: Natural History Study
Natural History Study April 10, 2011
Cameron will be part of an ongoing study that meets twice a year at Rush. We had an awesome experience for our first time there on Sunday. The big kahuna doctors were there and we got to meet with one individually. Dr. Khwaja is one the leaders in the clinical study in Boston and we got to meet with him.
Cameron was a little performer for him. (My sister who is a PT says that therapists call this performing “the doctor walk” --- kids will all of a sudden walk perfectly fine for doctors b/c they don’t want to see them again! Ha!) Cameron was definitely not walking, but she was doing things on cue that I can’t get her to do on a daily basis. We walked into the room and she did a pageant wave to him and his assistant and they both laughed. Once she saw him, she couldn’t stop smiling at him (not gonna lie, at some point I made eye contact with Cameron and had a mental message sent to her saying “I hear ya,” --- young doctor with floppy blonde hair, with a British accent who is leading this charge to fix my baby!). When they asked if she was vocal, Cameron blurted out “mama mama, baba baba.” Then when the doctor asked her where her nose was, she grabbed it. When she did these things for him, he was impressed and I said “I don’t know who this kid is!” They asked us a whole bunch of questions about Cameron’s history. Dr. Khawja observed her as she played with a toy and “read” a book, pushing buttons that make sounds, turning pages, etc.. Then, he got on the ground and played with her, he checked her reflexes and stood her up. She was giggling with him the whole time. He was so impressed with her eye contact, social skills, and use of right hand. He said that before we came in, just looking at her mutation, he thought he was going to see a child worse off and he couldn’t believe what he was seeing. We learned that her mutation is borderline moderate to severe. He couldn’t believe how high functioning and social she was. He said that just shows you that there are so many other factors that go into this (other genes and early intervention, therapy, etc.) and we can’t really tell how “active” or “inactive” each of her X chromosomes are. (One of Cam’s “X” chromosomes is fine and the other is impaired, but we don’t know if it’s working 25%, 50%, etc. And we don’t know how much the ‘healthy’ “X” is overriding the other one. The reason it’s primarily girls is because boys don’t have that other active “X” to survive. And the distribution of protein in the brain is randomized which explains why 2 girls can have the same mutation, but only 1 might be able to walk. – I hope I explained that okay, I really need these things dumbed down for me!)
Here’s the awesome news…. Dr. Khwaja said that Cameron is at the tail end of the regression phase!!!! I can’t even explain to you the weight that was lifted off our shoulders hearing that. I, of course, started crying hearing that. When I asked how long after the regression phase they start regaining skills, he said about 6 months after. He said Cameron probably has already started regaining skills, we just don’t notice the little things because we are around her 24/7. But we actually have seen more progress lately, it’s small and will probably always be very tiny steps, but it’s progress! All of our therapists have noticed progress too. He was impressed with her core strength once her muscles were active. He said Cameron has good potential to walk. Ahhh, more good news! We know it might not be until 3 or 5 or 7, but she could walk! This was all so reassuring that everything we are doing for her us working!
There were about 15 other families when we were there. There was quite a range. We were told a couple of times that our young girls will look so different in 10 years than the 12 year old girls look now because of all the medical advancements and early intervention (therapies) we have now. About 80% of the girls were walking. Some spoke words and some used their hand very functionally. We needed to see these things! There was an 8 year old there that I kept staring at trying to figure out why she was there. She was running around, using her hands perfectly fine. She was such an inspiration to see.
We found out that a clinical study has been completed in Italy. Dr. Khawja had received a call last week at the completion of it and said there were some very good results (we don’t assume a cure, but probably alleviating or reversing some symptoms). He is going there in June to see the girls and find out more. The second phase of the clinical trial in Boston will take place in the fall. They are accepting 30 girls to be part of this study. Cameron is one of the youngest girls now part of this Natural History Study. This clinical trial is looking for girls between 2-12. We think b/c of her young age; she would be a good candidate. We want to learn more about this in May. We know that if she was accepted, we would have to go to Boston once a month, but don’t know for how many months. The other part that makes us waver is that it’s a blind study, so some girls will be getting the drug while others will be getting a placebo. She might not even get the drug. We found out something interesting about the drug being used. We knew that the drug IGF-1 that is given in these trials is FDA approved, but we didn’t know what it was currently used for. He said it’s given for “shortness,” a growth drug of some sort. Interesting, huh?
We are anxious to go to Boston at the end of May for the National Rett conference to continue learning more to help Cameron reach her full potential.
I can’t tell you how much we needed Sunday! I was in a slump and this was the adrenaline rush I needed. It was so positive and hopeful. Thank you so much for all of your love and support. Please continue to think of us. We know we still have a long road ahead of us.
Next up is the strollathon on May 14!
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