:: Horseshoes and Hotdogs SUCCESS! ::

Horseshoes and Hotdogs was a huge success! A big thank you to all of you who came out and supported Connor's Vision. We also had several people donate who were there in spirit, thank you!  We really appreciate those of you who donated prizes for the raffle, so thank you: Esther and Mandi, from Pret-a-Porter Salon & Spa, Ra Sushi, Lotus Baby, Ashley Perry Photography and Cindy at C.O. International!

I am so happy to report that we made $1,175 for Connor's Vision, bringing the grand of this fund to $6,325!! All of your support and love is AMAZING and on behalf of the Perry family we thank you so very much.

A big congratulations to this year's winners, Mike Perry and Stuart Hartley!!! They are the raining CHAMPS of 2010!!

As you all know Ashley is an AWESOME photographer and here are some of her pictures of Horseshoes and Hotdogs. Until next year!!!  Thanks again!!

:: Horseshoes and Hotdogs ~ October 16th 1-4pm ::

When: October 16, 2010
Time: 1-4 pm
Where: Balboa Park Horseshoe Club
             Corner of 6th and Juniper in Balboa Park, San Diego
RSVP: Lori Jimenez • 858-336-8106 • lorijimenez@cox.net

Join us for the 1st annual horseshoe tournament, benefiting Connor's Vision a fund that helps the amazing Perry family pay for the mounting eye related expenses of their little boy Connor. Bring your family and friends and get ready to have some fun for a great cause! To play in the horseshoe tournament it is a $10 donation per person. If you don't have a team mate, don't worry, we'll find a great partner for you. Hotdogs and snacks will also be provided for a donation. We will also be selling raffle tickets for awesome prizes!!  We'll see you Saturday the 16th for a great day!!

If you can't make it, you can still donate!!To Donate please make your check payable to Brittinny Allen

and mail to:

Brittinny Allen
2370 Etiwanda Street
San Diego, CA 92107

If you have any questions please contact Lori Jimenez at lorijimenez@cox.net or Brittinny Allen at britellyse@hotmail.com. Brittinny and Lori will give 100% of the donations to Mike and Ashley Perry. We will be accepting donations throughout the year. Thank you so much for your support!

To find out more about Connor's story, read the previous entries below. Thank you!!

DIRECTIONS:
163 south; use the University Avenue exit but proceed straight south on 6th Avenue; turn left on El Prado Drive; turn right on Balboa Drive and proceed straight past Juniper Street; the courts will be immediately on your right. Find parking and let's have some fun!

:: Genetic Testing Results ::

Everyday I remember how grateful I am to have this little man in my life, in our life, as a son, a brother and a student. I get to teach him everything I know and love him with my whole heart! I get to comfort him, hold him, hug him, kiss him, and let him know Mom and Dad will protect him and only do things that will be good for him as he grows older.

Connor has gone through many doctor's appointments, exams, physicals, a lot for a two year old and he continues to be brave and is beginning to really love a few of his doctors.

On Friday, Dr. Byrd left a message stating Connor's genetic testing was in, but we were unable to speak with her until this morning. Connor's collagen testing came back negative. This means there was no mutation found in his gene, therefore they will NOT diagnose him with Stickler's Syndrome. This test has a 73% chance for being correct and Connor could fall into the 27% of having Stickler's Syndrome, but have negative test results. Connor's eyes are so severe and very striking to all the doctor's that they want to treat him like a Stickler's Syndrome patient. Dr. Byrd mentioned that the severity of Connor's eyes are so abnormal, that it makes more sense for a disease (Stickler's) to be attacking his eye sight. Connor is going to be treated as a Stickler's patient for now. He is going to be watched closely by his eye doctor's and have full physicals more regularly.

What does this mean for us? Well, we have been wanting answers since we first found out about Connor's eyes at 6 weeks. 2 years and 4 months later, we still want answers...if we will ever have answers, we do not know. We are happy Connor was not diagnosed with a disease. Thankful he will be monitored by a team of doctor's that we have much appreciation for.

He is an awesome, happy, loving, fun, a normal two year old terror at moments and we are so thankful for him. Mike and I decided when I was pregnant with Connor we would raise the child God gave us, no matter what the health problems would be. We got the child God gave us and we are so blessed!!! Everyone has hardships, this journey together as a family has been hard, but life is full when you are surrounded by amazing friends and family who support you emotionally, physically, spiritually and financially each step of the way.

:: Genetic Testing ::

Connor is one tough little man. We went for blood work tonight to start his Genetic Testing for Stickler's Syndrome. He was nervous to go into the office, but once he sat on my lap - he was good. Not a single tear, only a few ouch's. He got pricked in both arms because he moved, but once ice cream was mentioned he was doing alright. He is proud of his blue circles (on his arms) for being a good boy at the doctor :) We are back to the waiting game as it will take 4-8 weeks to receive results from these tests. Thanks for all your support...

:: A reminder on how to donate ::

To Donate please make your check payable to Brittinny Allen
and mail to:

Brittinny Allen
2370 Etiwanda Street
San Diego, CA 92107

If you have any questions please contact Lori Jimenez at lorijimenez@cox.net or Brittinny Allen at britellyse@hotmail.com. Brittinny and Lori will give 100% of the donations to Mike and Ashley Perry. We will be accepting donations throughout the year. Thank you so much for your support!

:: July Update ::

Hi Friends...

A little update on our Connor man :D

Contacts are getting a bit easier - thankfully! Since Connor's eye is not shaped like a normal eye, they are having a hard time fitting the contacts. We have now lost two of them :( We will be seeing our contact lens specialist next Friday for a new pair, hoping these ones will fit perfectly! They say third time is a charm! Dr. Lee will be leaving us, so we will be getting a new contact lens specialist to work with. Please pray we will be able to establish a good relationship with this doctor, as these appointments are very rough for Connor. Dr. Lee has become a friend to him and has finally built trust with her and enjoys seeing her. We will miss her a lot!

On Tuesday, July 20th we met with Dr. Bird, a genetics specialist. Dr. Demmer requested for Connor to get genetic testing done for Stickler's Syndrome. It took two months to get an appointment, but we are thankful we are at Rady's Children in San Diego and do not have to go to UCLA. Dr. Bird was wonderful, she loved Connor and he instantly loved her when he got 8 Thomas the Train Stickers. She did a complete physical on Connor and ask for history of him as well as each of our families. Dr. Bird was very thankful to see Dr. Demmer requesting to put Connor through testing now at such a young age. Dr. Bird said we could begin testing now, but each test can cost $2000 - $5000. We decided we would wait for authorization from our insurance for these tests which will take about 30 days. We will start testing hopefully beginning of September. Connor's genetic testing will just include blood work. We are not sure how long it will take to get results from testing, as it can lead to Mike, Taylor and myself all being tested. We will update you as soon as we find out when his testing will begin.

Thank you again for all your uplifting letters, support and love for our family and sweet boy. We are truly grateful for each one of you!

Love,
Mike and Ashley

:: We have raised $5,150 ::

:: His eyes are beautiful ::

Last Thursday was our official post opp visit with Dr. Demmer. We walked in with a list of questions for him to answer and this is what we got...Connor's eyes are not crossing :D, he CAN see and does use his right eye :D, his irregular shaped and not centered pupils are not related to any of his eye problems - it can just happen, Connor has a slight stigmatism, his egg shaped eye creates the optic nerve to attach in a different spot which can cause different readings of his prescription - so it is possible that his prescription has never been read correctly, even now. Dr. Demmer says we will never know until he can tell us, which is about 10-12 years of age. Because Dr. Demmer has never seen such a high myopia (nearsightedness) in a 2 year old we are beginning Genetic testing on July 20th. I know many have asked if this is preventable and is there corrective surgery...at this point the answer is a big don't know. Until there is a proper diagnosis of Connor's eyes we will not know. The next few years Connor is going to be watched closer and we will hopefully find out more each visit to Jule's Stein.

We also saw the contact specialist to pick up Connor's contacts. It was the big day as Connor got to go walking without his glasses, just his new, first pair, of contacts. Once we got both contacts in Connor walked around the building, licking his lollipop, smiling and told daddy "that's not so bad". It was so cute...I think there was a few of us with tears. :) His eyes are beautiful, he has the most gorgeous long eye lashes and now cool eyes. His right eye is green and blue eye is bluer (because it is a blue contact). They have colored contacts so it makes it easier to remember which eye they go into, easier to find if you loose it and easier to actually see it on the eye...I was not excited about this at first, but now I am so thankful for this technology as it makes OUR life a bit easier.

Now that we are home, not much has changed. It is a horrible process putting them in and taking them out...something no parent wants to go through. However we have been told that it is the best thing for Connor, so Mike and I are sticking together and supporting each other as we both are having an extremely hard time. Connor screams, cries, kicks, asks us "please stop mommy/daddy", and sweats until it looks like he has jumped into a swimming pool with his clothes on. It is rough, but once he has them in he claps and and says "good job connor", we shower him in hugs, kisses, as many otter pops as he wants and a new matchbox truck! Then he gets to do whatever he wants (usually a request to walk the alley ways :D). We are hoping it will get easier. The first day we lost a contact and found it three hours later, it came back to life thank god!

Thanks again for all the love, support, donations and continuous prayer for Connor. I know there is so many of us wanting answers and to hear his eyes are not going to keep getting worse. As the mom of Connor I have just had to lift everything off my chest and know each step is a step in the right direction and we are working each day to make the best life possible for him. God KNOWS the purpose to all of this and HOPEfully one day it will be revealed to us.

:: We have raised $5090, thank you everyone! ::

:: Hope ::

My Dear Child, 

Do you know what hope is?

It's magic and it's free.

It's not a prescription.

It's not in an IV.

It punctuates our laughter.

It sparkles in our tears.

It simmers under sorrows.

It dissipates our fears.

Do you know what hope is?

It's reaching past today.

It's dreaming of tomorrow.

It's trying a new way.

It's pushing past impossible.

It's pounding down the door.

It's questioning the answer.

It's always seeking more.

It' rumours of a break.

It's whispers of a cure. 

A roller coaster ride.

Of remedies, unsure.

Do you know what hope is?

It's candy dor the soul. 

It's perfume for the spirit.

To share it makes you whole.

Take my hand, little one, 

Let's share this hope together!

Love, 

GiGi Jean

:: Connor's May UCLA Visit ::

Last week we were at UCLA for Connor's official examination under anesthesia with Dr. Demmer. We were relieved to find out Connor's eyes are completely healthy!!! Praise GOD! Dr. Demmer did find that Connor's eyes were slightly different from the first prescription he had given us, so we are ordering his new glasses tomorrow with a new prescription of -22.5 in the left eye and -19.5 in the right eye. He also saw that Connor's eye is shaped like an egg rather than a ping pong ball, he is not sure why...so he is doing some research on this. Dr. Demmer is concerned that there could be other problems Connor has that is creating such a severe change in his eyes. He has asked us to see a genetic specialist to rule out any other diseases he could have causing his eye problems. This is our next step along with getting contacts. Connor spent two days getting fitted for contacts while we were there and we will go back Monday to try and practice getting them in. This will be hard transition for Connor because of his age, but it is highly recommended as it will give Connor clarity of objects and peripheral vision. The funniest part of our visit was when the doc sat me down to discuss the price of Connor's contacts (just incase I fainted!), each pair will cost $500. This was a hard trip for us to make as a family, but we are so grateful to all of you as we knew we had continuous support the whole time we were there. We thank you from the bottom of our hearts for the love, prayers and support. We will keep you posted on everything we find out and the dates of his next appointments.

Connor in front of the Jules Stein Institute

Connor waiting with mommy

Connor waiting to go in

Connor and Grandma making wishes for the day

:: Welcome Taylor Sunshine Perry ::

Taylor Sunshine Perry came into this world on April 22 at 2:11 am. She was a healthy 7lbs 11 oz. She is a beautiful addition to the family and the Perry's are doing great!

Since miss Taylor arrived a little later than expected the Perry's have rescheduled Connor's eye appointment at UCLA for May 19th. We'll update you after his appointment.

As of May 3rd we have raised $4,940!!!! Wow, the love for the Perry family is amazing and so are all of you who have helped out.

Lots of love to you Perry family!!! xoxo

Yoga & Raffle Success!

Thank you to everyone who participated in our Yoga and Raffle last night, it was a great success! We raised $500 for Connor's Vision, bringing our grand total to $4,430!

A special thank you to Kori for teaching such a wonderful class and to Haute Yoga Studio for letting us use their amazing space.

Thanks again everyone, your support has made a huge difference in the Perry's lives.

:: Lori ::

We Have Raised......

As of April 9 we have raised an amazing total of $3,930!!! Thank you everyone!!

Yoga & Raffle for Connor's Vision ~ April 16th

Click on image to view larger

We Have Raised......

$3080.00 as of 3/26/10. Thank you so much everyone!!!

3-25-10 Appointment at the Jules Stein Eye Institute

Yesterday was our first appointment at UCLA with Dr. Joseph Demer. It was an exhausting 4 hours in his office, however, for the majority of the appointment Connor did very well, with just a few tantrums and cries. According to Dr. Demer, Connor's eyes are very straight, so we know his Strabisimus surgery was successful. It was also confirmed that Connor's eye sight has gotten much worse. He was given a new prescription of -17.5 in his right eye and -19 in his left eye. This concerns us a bit, as this change is not normal. There are many reasons why his eye could be developing this way. Currently we have been left in the dark, as Dr. Demer does not want was to worry over possibilities. He wants to make a diagnosis and then educate us. He mentioned it could be due to a disease in his lens, the actual shape of his eye, or the eye developing too quickly. In order to find out what could be going on, Connor will go under Anesthesia at the end of April (there is not a set date yet) to look at his complete eye anatomy. Another doctor will also attend who works with children in contacts. Dr. Demer thinks it would be a smart move to switch Connor into contacts because of his strong prescription.

We thank everyone for your phone calls, prayers, texts, emails and donations. It has meant SO much to us to know there is so many people who love our little boy as much as we do and receiving so much support helps to confirm we are making the right decisions in finding out Connor's proper diagnosis. We love you all and will keep you posted with the dates they set for his next appointment.

~ Ashley and Mike

Connor Checking out the doctor's office :)
3-25-10

The Big Reveal

We surprised the Perry's with a check on March 22nd for $1300.00 and told them donations were still coming in. The Perry's are so grateful for the fund and say a big thank you to all their wonderful family and friends!

We will keep you posted on the March 25th visit.

Connor's Story and how to Donate

We all know Connor Perry as a little boy full of energy, happiness and lots of love, whose smiles and giggles light up a room. He has two amazing parents, Mike and Ashley, who absolutely adore him. As a family they share a love for nature, whether it be the ocean or the mountains you’ll find them sharing nature’s beauty together. The Perry’s are going to be expanding their love very soon because they have a baby girl due April 9th and they couldn’t be happier.

When Connor was about a month old a family friend noticed his pupil wasn’t in the center of his eye. At 6 months old doctors checked his eyesight by putting him under anesthesia, the result, he was extremely nearsighted with a prescription of minus 12.25 and minus 11.5. The Perry’s then got Connor glasses and did eye exercises by patching of the better eye to strengthen the eye muscle.

When Connor was 13 ½ months old he had strabismus surgery to correct the misalignment of his eyes. With Strabismus one eye may be directed straight ahead while the other is turned inward (esotropia), outward (exotropia), upward (hypertropia), or downward (hypotropia). The misalignment may always be noticeable, or it may come and go. The misaligned eye may straighten at times and the straight eye may turn. Strabismus can occur in newborn babies, but it is more likely to appear later in infancy or early childhood. It can also occur in older children and adults. If treatment of strabismus is delayed, amblyopia (lazy eye) may develop, leading to loss of vision in the eye that is not being used. Strabismus is caused, or partially caused, by errors of refraction (the way light enters the eye), illness, injury or heredity.

The Perry’s were so happy when they were told at the follow up visit the surgery was a success. Since then Ashley has been asking the doctors to recheck Connor’s eyes. On March 11th the doctors finally did and the results were not good. His eyesight has gotten much worse. Trying to do everything they can for their little boy, Ashley and Mike made an appointment for March 25th at The Jules Stein Eye Institute at UCLA, a worldwide leader and innovator in eye care, and has long been recognized for outstanding advancements in vision sciences and the highest quality patient care. Their appointment is with one of the best Ophthalmologists, Dr Joseph Demer, Chief of Comprehensive Ophthalmology. This visit and possible future surgeries will get very expensive, not to mention the constant cost of new glasses for Connor.

The Connor’s Vision Fund has been established to help Mike and Ashley with these unexpected costs. Any amount you can donate will help. Know that you are making a difference in this family’s life.

To Donate please make your check payable to Brittinny Allen
and mail to:

Brittinny Allen
2370 Etiwanda Street
San Diego, CA 92107

If you have any questions please contact Lori Jimenez at lorijimenez@cox.net or Brittinny Allen at britellyse@hotmail.com. Brittinny and Lori will give 100% of the donations to Mike and Ashley Perry. We will be accepting donations throughout the year. Thank you so much for your support!