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Sunday, May 31, 2009

Gavin's 5k a SUCCESS!

We had such a GREAT turnout Saturday, and had a blast!

People from high school (that I hadn't seen from high school), old coworkers from years ago, and many others who read the article in the newspaper, showed up to support Gavin. We are very thankful for each of you. You all made this a very special day for our family, one we will never forget. A special thank you to the Sheriff's Dept for their dedication to this cause, to make it possible.

I have to download all my pics, but here is one of Gavin and Landon, shortly after the race.


On your mark!


Proud medal winner.

Again, hoping I get the camera out of his face!

Friday, May 29, 2009

Excited!

Looking forward to seeing all of you who will be joining us tomorrow at the 5k run/walk. (Info to the right).

If you have registered, or still need to register, they are asking you get there somewhere between 6:30 and 7:30am. (earlier the better). Just be sure to put "Gavin" on the form somewhere, and mention it when turning it in.

Race starts at 8am.

Pancake breakfast will follow.

Come find us in our booth! We will have flyers and Gavin's Grandma's cookies! All proceeds go towards the cause.

Let me know if you have any questions... see you tomorrow.

Thursday, May 28, 2009

About 1 week left

...and $6,730.00 raised for Gavin's Groupies!

Can you believe it. My original goal ($1,500) has now been bumbed up to $10,000. Yes, I know... I only have a week left (and 2 days to be exact), but I set high expectations. ;)

PLEASE feel free to still donate if you so wish. Just click on the VisionWalk button to your right.

The Foundation for Fighting Blindness funds many clinical studies, and we hope (I know) these will be the answer for Gavin we are searching for as far as treatment. A cure WILL happen.

I just pray it's soon enough, and during my lifetime, so I can see the joy in his eyes.

Thank you for your continued support. I love Gavin SO much, and it truly warms my heart to see so many others love and support him.

First glance at the first tooth

Ok, mom. I will humor you, and open just a little. Now take the pic and give me my cereal.
HA HA... good tickle mom. Now I'm really getting hungry. Hurry.
This is getting a little out of hand lady. What else do you want?

Seriously, get the camera out of my face, or I'm calling dad.

Tuesday, May 26, 2009

Just another day at the beach...


He CANNOT stand his hat.
He CANNOT stand his sunglasses.
But LOVES the beach and the sand, so we compromised.
We did without the sunglasses,
and he was a happy camper as long as he was jumping!

Monday, May 25, 2009

Favorite quote

One of my most favorite quotes EVER is one by Helen Keller. I remember having this quote written out on a little paper and slipped into the front clear flap of my high school folder. Very ironic, how years later, that quote would prove to be SO true in my life. I never needed to reread those few words by Miss Keller more than the past 12 months of my life. The irony continues, as my son and herself share a similar world (not entirely, but slightly parallel as far as not relying on sight).

Character cannot be developed in ease and quiet.
Only through experience of trial and suffering
can the soul be strengthened,
ambition inspired,
and success achieved.

And a new Helen Kellen favorite that has given me a new perception of her world, and the world of those who live with visual impairment...

I can see, and that is why I can be happy,
in what you call the dark,
but which to me is golden.
I can see a God-made world,
not a manmade world.

What an amazing woman, I would have loved to meet her.

Sunday, May 24, 2009

Hold the presses!

If you live in the Chino area, you should really pick up the Chino Champion! Gavin made the front page. I look a little jolted, because the only way Gavin is really happy and not doing the eye pressing, is when he's standing and jumping! Troy and Landon looked straight and smiled continously for about 30 seconds so we could get a good pic of Gavin. It was pretty funny.

It was really nicely done, thank you Chino Champion!


Next Saturday’s Chino Hills Challenge 5K run/walk at Chino Hills High School will have special meaning for the Stevens family of Chino. Gavin Stevens, 7-month-old son of Troy and Jennifer Stevens and younger brother of 5-year-old Landon, will serve as grand marshal of the event, three months after Gavin was found to likely have a condition that is slowly taking his sight.

The Chino Hills Sheriff’s Department, which hosts the annual 5K run/walk, said $5 from all participants who mention Gavin Stevens on their registration form will go toward a fund for the boy. That money could be used for Gavin’s medical costs, future schooling, Braille Institute classes and travel expenses, Mrs. Stevens said.

The Chino Hills Challenge is scheduled for 7:30 a.m. at Chino Hills High School, 16150 Pomona Rincon Road. Registration forms are available at pacersrunningclub.comoractive.com.
No cure is known for Gavin’s condition, Leber congenital amaurosis (LCA), Mrs. Stevens said. “It’s predominately a blindness that is present at birth. There are different variations and degrees of LCA. We think he has a pretty severe case in both eyes,” Mrs. Stevens said.

Doctors noticed nothing unusual about Gavin’s eyes the day he was born, but Mrs. Stevens said she knew something wasn’t right. “She didn’t know what it was,” Mr. Stevens said. “There wasn’t anything physically wrong with his eyes, just a mother’s intuition. I kind of told her she was crazy and on heavy morphine and just to relax.”

Two months later, she noticed Gavin wasn’t tracking objects with his eyes as he should, but the child passed every test the doctors administered. “A doctor told us some children develop a little later than others, but bring him back in four months and we’ll check him again,” Mrs. Stevens said.

After three months, Gavin’s parent could no longer wait and took him back to the doctor. There, the doctor noticed additional symptoms, such as difficulty focusing. They were sent to a pediatric specialist, who mentioned the possibility of LCA.“I was in complete tears after hearing the news,” Mrs. Stevens said. “We didn’t know what to do or where to go at first.”

LCAis a hereditary condition, but the Stevens family knows of no previous cases, Mr. Stevens said.“ This is completely new to us, so we are kind of taken back a little bit and now we are just trying to learn about it,” he said.

Doctors said either one parent carries the gene and it manifested itself in a mutated form — a 1 in 800,000 chance— or both parents are carriers of the recessive gene and it matched up, Mrs. Stevens said.

“Right now, we are still unsure how exactly Gavin got it,” she added. The family is currently working with Children’s Hospital in Los Angeles, but their medical insurance will not approve an Electro Retina Gram (ERG),which would confirm if Gavin has LCA. “It was not approved the day before Gavin was to have the procedure,” Mrs. Stevens said.

An ERG, similar to an EKG of the heart but for the eye, can get deep into the eye, take pictures, test light stimulus and see what the brain can see. “By looking at him more in depth, the doctor would be able to tell if he has LCA. If so, the family would have to have blood tests done to see where the gene lies,” Mrs. Stevens said.

Eight people worldwide diagnosed with LCA have been cured through gene therapy. “That’s what we are trying to push for. I personally believe awareness is the key to funding and we’re active fundraisers for the Foundation Fighting Blindness. They have provided a lot of funding toward these clinical trial studies,” Mrs.Stevens said.

Troy and Jennifer Stevens are lifelong residents of Chino. Mr. Stevens, 32, is a 1995 graduate of Don Lugo High School. Mrs. Stevens, 34, is a1993 Chino High School graduate.

Last year, they registered Landon to play baseball with Chino National Little League. He wears No. 2 for the T-ball Pirates. Chino National Little League board member Mark Higgins and his wife M.J., both sheriff’s deputies in Chino Hills and head organizers of the Chino Hills Challenge, heard of Gavin’s condition and wanted to help.

“We are really grateful to Chino National being so kind. This is our first year with the league,” Mr. Stevens said. Landon has also been a big help to his little brother, the parents’said. “He’s really good with him. From day one, we told him, if you talk to him, just get close,” Mr. Stevens said. “He’s always rolling over,” Landon said with a big smile.

Mr. Stevens said Gavin is functioning as a 7-month-old should, including crawling. “We’re making sure his development stays on track. His hearing is fine and all other motor skills are fine,” he said. Mrs. Stevens said the family is already learning to read Braille — Gavin too.

“We want to make sure he’s not defined by his disability, that’s a part of who he is,” Mrs. Stevens said. “We’re going to do all of life experiences and he’ll be a part of everything. His way of seeing everything will be through his hands.”

Monday, May 18, 2009

Silly boys

All I needed for Mother's Day, was a smile from this one

And a reminder of what a ham I truly have in this one!



Sunday, May 17, 2009

VisionWalk shirts for Gavin's Groupies

We are getting shirts for the VisionWalk 2009 at CSUF on June 7th. All of you who are coming, PLEASE PLEASE PLEASE email me, comment here, etc.. I want to make sure EVERY single person coming gets a Gavin's Groupies shirt.

Those of you not familiar with this event, please read here. We have raised close to $7,000. I'm not asking for more donations, if you would like to come, please just come. Don't worry about donating. There is no participation "fee", etc..My whole point with this was to raise awareness, and through the generosity of so many people, we have raised well over the goal. I'm so proud of our team, and all of you who made it possible to raise so much money.

Please let me know ASAP if you are coming!! (email: jstevens04@gmail.com) Thank you.

The ancestor of every action is a thought. ~Emerson

Friday, May 15, 2009

Gavin's first beach encounter



...minus bigfoot.

Park fun with BI Families

Gavin had his first encounter with the Braille Institute today. We met some other families in Moreno Valley at a park. The other children were also visually impaired, and one little girl who is two, has similar assumptions of diagnosis as Gavin. It was nice to see her up close and interact with us. I had Gavin sit right next to her on the table, and she felt her way around his leg and feet. He felt her back, and was rubbing her arm. It was adorable to see! He sat so still right next to her. It's funny how it is not taught, but the fingers and hands become their eyes.

Gavin will be visited by the at-home teacher starting next week. She will work on his development, and make sure he stays on track. From what she observed today, she said his visual impairment is not negatively impacting his development (speech, motor skills, etc..). We hope that continues, and she will work with him, and me. She felt he was right on with where he should be, which is what his pediatrician says as well. I notice him not sitting up with much strength yet, but that will all come. I'm so excited we are meeting other families. I know he's young and probably unaware, but it meant a lot to me for him to sit right next to that little girl, who has been through what he is going through. I looked at these two little people, and it was encouraging to see their interaction. It moved me, and they had not a clue!

We are hoping to meet with the other familes on a regular basis. It will be nice to see each others children grow and mature as well as share stories, concerns, and triumphs.

We came home with a whole bag of resources for Troy and I. We received our first hands-on braille primer booklet. Landon got his first lesson tonight after dinner. I want him to want to learn braille as well, and he does. We learned a few letters. Braille can be very complex, it's way more than dots representing letters. There are so many layers to it (which I had NO idea). I want to take a 3 day crash course, in the upcoming months (anyone wanna join?). :)

We also have registered for the Families Connecting with Families International Conference. It is in July, and it's a whole weekend event packed with hands on resources, doctors, loads of info, etc. I'm SO excited!

His first tooth also broke through yesterday. (Yes, I got misty eyed - what a sap!)

Wednesday, May 13, 2009

Gene Therapy video

Here is another video. This is a quick peek into the topic of gene therapy for LCA specific blindness. Like I mentioned before, if the doctors suspicion is correct, and Gavin DOES have LCA (Leber's Congenital Amaurosis), gene therapy will be an option for him one day. This study been in the works now for about 15 years, and the trial studies have helped blindness in I believe 8 people (the last count that was mentioned at the conference).

Even if this isn't something that can help Gavin soon, my heart goes out to the parents of these young individuals who have participated in the study. To imagine seeing their children gain sight, is a moment in my life I only can dream of right now. To know they are actually going through this, makes the hairs on my arms stand up. I commend them for their patience in the long, enduring study. I hope they are gratified by every moment given to them as their children begin to visually make out the outline of their face, and eventually, God willing, every last detail of their phsyical features. I can only imagine the feeling, and am patiently waiting for our day.



Watch CBS Videos Online

Excerpt from another participant, age 22. He had the gene replacement surgery on Jan. 31, 2008.

JUST TWO days later his response:


Following the surgery at the University of Florida, he said it took a few days of recovery before he was able to go outdoors -- but what he saw was spectacular. “I saw blue sky for the first time,’’ he said. “I was just standing in disbelief, thinking that the sky was always this blue, and I could never see it. I couldn’t believe it.’’

Since then, he has emailed Dr. Jacobson, the researcher who has been working with Turner for 14 years, to thank him and the many other scientists who have brought him to this day. “I said that every morning I wake up and look at the sun rise, and every day it goes down, and I think these things are so priceless. And they gave me that gift,’’ Turner says.

Monday, May 11, 2009

Very inspirational, a must see

video

PS - Thank you Uncle Herb and Shannon for sending this to me.

Wednesday, May 6, 2009

Music therapy

- (this particular section article by Charles Gourgey)

Music therapy is an evolving discipline integrating psychotherapy with the use of music. The term therapy usually brings to mind a verbal model; early forms of thera­py were called the "talking cure." A verbal model, however, is not appropriate foreveryone. Many people of all ages, and especially young children whose language skills are not yet formed, respond better to therapies that do not depend on words. Music reaches the child beneath the level of words, providing a channel of communi­cation close to the child's own experience.

Music can be a potent means of communication for helping a child whose social skillsmay be deficient to form relationships with others. Many education settings now use music therapy to help children develop these skills, and in these settings music therapyhas become a standard part of a child's individualized education plan. Because children who are visually impaired face special challenges in their relationships with their peers, music therapy merits consideration by teachers who work with these children.

We have been informed by all the doctors to encourage music to Gavin. It's a positive learning experience on all levels. We don't drown out the normal daily sounds of our house, but that being said, music is always playing. It's important Gavin hears the ticking of the clock, the sound of water as we turn on the faucet, the sound of the flushing toilet, etc. These will all be guides to him to let him know where he is in each room, as he begins to become more mobile, and begins walking.

Gavin had his first piano/music lesson Sunday. Ok, well, Landon (my 5 yr old) had his first piano lesson Sunday, and Gavin sat in his carseat next to the piano bench. I kept him occupied with a small toy, but wanted him to listen and hear. I wanted him to hear my brother (piano teacher), describe the keys, wanted him to hear the flipping of the piano book, and the instruction of hand placement. It is something we will continue to expose to him. If it's something he's not interested in, fine... but until then music will be slowly introduced to him as a form of therapy and explorement.

Landon loved it! I'm hoping he continues with it, alongside his sport activities. Also hoping he has the music ear and talent like his grandpa and my brother and little sister. That gene skipped me! I've always been intrigued by the piano, but never learned how to play. I'm happy to have it exposed to my kids, and am hoping it will be a positive experience.

Monday, May 4, 2009

LCA 101

I found an interesting article about LCA (the disease we believe Gavin has). It's pretty straight forward, and doesn't consist of too much medical terminology that causes confusion. It describes LCA, but also gets into gene mutation (as well as a bunch of other facts) if you're a nerd like me, and likes to read up on that kind of stuff.

Under item #7 (bullet #3) it describes the gene therapy I spoke earlier about. I didn't do a very good job describing it, but it does go into considerable detail about the RPE65 gene and why/how replacing it can create sight, and be a cure, not just treatment. It's pretty fascinating!

The article is here, courtesy of The Foundation for Retinal Research.

We have ANOTHER appt tomorrow with the pediatric retina specialist #2. Wish us luck!

Sunday, May 3, 2009

Chino Hills 5K Run/Walk Challenge!

I am so honored to be a part of the wonderful people in my circle. Even people I don't know very well, continue to astonish me with their offering of help with Gavin.

Troy and I are board members for Chino National Little League. We have met so many nice, genuine people who have taken such a liking to Gavin and his well being. Last week, what was offered to us what nothing less than wonderful. One of our fellow board members, who is a sheriff, offered an idea for help for Gavin's fund.

There is an annual 5K Run/Walk Challenge that takes place in Chino Hills. This race benefits the Explorer Program of the San Bernardino Sheriff's Dept., Chino Hills Station (Explorer Post 503). They are a non-profit organization.

The Sheriff's Dept offered to co-sponsor Gavin for this event! This is the first time they have ever co-sponsored somebody. I am so ecstatic of the support for our son. It is truly a validation of the good-hearted people out there, and what a wonderful community we are a part of.

A portion of every entry will go towards Gavin's fund.

Whether you are a runner, a walker or just like to cheer for your friends and family, please come out for a day of FUN! It will be a fun day! We will have a booth, Gavin will be there and I would love all of you runners, walkers out there to come on out!

I have the registration forms on me. I should be getting some emailed to me as well in the next few days. If you would like a form(s), please let me know! We are trying to do as many pre-registers as possible before the event.

Race Details: Saturday, May 30th at Chino Hills High School
Address: 16150 Pomona Rincon Rd, Chino Hills
Time: 7:30 - 12pm Community Expo (8am 5K Start)
Price: $25 for adults / $15 children (12 and under)
Awards: 3 deep in each 5k category (ALL children 12 and under receive a medal)
Race Beneficiary: Explorer Program of SB Sheriffs Dept and Gavin Stevens

Other details:
  • Pancake Breakfast
  • Food / Entertainment
  • Police and Fire Expo with vehicles on display
  • Race T-shirt for all participants
  • Vendor booths (* booths still available for $150 fee - please contact if interested)

This will be a fun day to support the Explorer program, as well as Gavin.

Please email me if you have any questions or would like some registration forms, or go ahead and leave it in the comments section.

Hope to see you May 30th! And a special THANK YOU to the board members and Sheriff's Dept for making this possible. You are an extension of my family, and am truly grateful...

Friday, May 1, 2009

6 month check up

Gavin had his check up today and some shots (boo). He is still on track developmentally (motor skills), which is refreshing to hear. Close to 70th percentile in height/weight.

We decided on an antioxidant for him to take. This can slow retinal disease progression, and improve eye health. It won't fix what he has, but can slow down the disease, which is big, because what he has, has the potential to be degenerative. For all of you with eye problems, retinal problems, etc.. PLEASE get on an antioxidant supplement. It can be HUGE for preserving the site you do have. I have a few names that were given to me, they are over the counter, so no prescription is necessary. Let me know and I can share the info I have after doing some research.

The problem we had, which I found very odd, we couldn't find an antioxidant supplement for infants or even children? If in fact, Gavin does has LCA, and it has been proven supplements can help, and LCA forms are present at birth - then why aren't there any which can be given to children? There ARE babies born with vision loss, there are children with vision loss? It's not just a degenerative macular disease adults get?

We had to call manufacturers, speak to pharmacists, etc. Finally, Dr. Warren (Gavin's pediatrician), felt safe to go with a particular brand. It's kind of a Mickey Mouse job as far as dosage, because I'm only going to give him 1/3 of the recommended full capsule. The capsule is powder, so I'm going to be dividing this powder up into thirds.

Hope the neighbors don't catch me in the middle of dividing up this white powder, and even worse giving it to my child. *wink