Saturday, September 04, 2010

New Goals

The shock of Katie's diagnosis hit us immediately and though we are still quite stunned, our feelings have turned to sadness and even anger. If you know me at all, then you know I am not at all into feeling that way. Last evening I remembered that my friend Stacey, a friends that I made through the wonderful world of adoption sent me a website to bookmark in case of such a diagnosis. She was kind enough to share with me the story of her uncles who suffered from the same hereditary affliction that robbed them all of their sight. I looked at it a few times while I was waiting and saw that it held a wealth of info but put it aside until we were were given the diagnosis this past Wednesday. The Foundation Fighting Blindness has a mission statement on their site...it is the following:

The urgent mission of the Foundation Fighting Blindness, Inc. is to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa (RP), macular degeneration, Usher syndrome, and the entire spectrum of retinal degenerative diseases.

Katie's disease is Cone-Rod Dystrophy which falls under this umbrella of Retinitis Pigmentosa, a group of horrible hereditary diseases.

As I looked again at the website, I discovered something that I had not seen the first few times that I looked and that was a way for me and for my friends far and wide to not only help Katie Starr but any person who may be left totally in the dark due to a hereditary eye disease. The foundation holds 5K walks all over the country on different dates and the South Florida walk is October 23rd at 10:00 am in Fort Lauderdale. I have put together a team and in one day not only do we have people joining us to walk in solidarity but also almost $2,000.00 in donations.

I have two goals in the forefront of my mind now.

The first one is to raise awareness and money to help fund the cutting edge scientific research that will surely one day bring about treatments and even a cure.

The second one is to assist our daughter with developing her mind's eye. We are going to expose her to as much as possible during this time that she has most of her sight still intact. In case a cure is not found in time, I want her to be able to tap into her memory resources. It will help her to form the mental pictures that will enhance her life. I have not developed that plan as of yet and I am sure it will be a work in progress. I really want to bring her back to China as soon as it is financially possible for us. We will make that happen....no doubt!

I ask you to join with us on our first goal and please share this information with others. Please link back to this site so that your friends can read our story. Please facebook the info if you will and feel free to friend me if you choose to do so. Please comment that you would like to be my friend and I will give you my full name if you do not already know it. You can also share it on any online forums that you are a member of. Together, we can meet this goal. The goal will surely be met in our lifetime but we need it to happen quickly for Katie Starr

This could have been any one's child. It has happened to our child though so I am asking for you to help us.

You can make a donation of ANY amount at the following link: TEAM KATIE STARR

I also invite you to check out GuideStar that will allow you to verify this charity.

Thank you to all that will not just read this and think "That poor little girl" but the ones that will share this with others and give even a dollar to help. You are our heros!!

With gratitude,

5 comments:

Mommy, Baba(daddy in Manderine), Shane, Kyle arriving home after adopting precious little baby Mae Li from China . said...

Lori and Marc,

There really are not words to say how sorry I am for what your sweet Katie and you all are going through right now.

You all will certainly be in our fervent prayers for healing, strength and guidance.

We are here if you need anything at all. Anything. To talk, to pray together...

We'll be at the walk supporting Katie, rain or shine!

Everything you shared with us on your approach to dealing and helping Katie deal is right on, and Katie will not only do indescribably well because she is such an extraordinary and strong little girl, but also because WHO she is...IS a genuine reflection of YOU and MARC.

She will succeed in all she does no matter what comes. God has already given her the tools she needs to overcome this. YOU, MARC, a beautiful family, friends that genuinely love you, and He has given her a heart of gold.

You have given her and are giving her INsight. That is more powerful and sees far deeper and more profound than eyesight.

Only God knows what the future holds. I pray with faith and hope for Katie's eyes to be healed, knowing that no matter what God's answer is, God will continue to bless this little girl who He loves more than any words could ever convey!

We Love You all very much!

Brenda and Mark

Magi said...

While I was waiting to bring my Sera home, I remember reading your blog and your journey to adopt your beautiful daughter. I was shocked when I saw Tammie's Facebook status about her diagnosis. I know that your world must be rocked right now.

I am more than happy to share links about this organization. I'm on Facebook as Margarita Mandoki McClain.

Dianna and Steve said...

Hi, we are also in the PB China group. We adopted our daughter 2.5 years ago (she is 7 now), in March she was also diagnosed with cone-rod dystrophy. We would love to talk to you about this when you have time. We know exactly how you feel about being completely devastated.

Steve and Dianna Press
sspfiremedic@comcast.net

Peak said...

Oh Lori I am just crying for Katie Star. I am so sorry. My niece has Cystic Fibrosis and it is just beyone frustrating to watch a child suffer knowing there is no cure. We do CF walks too, it so helps to know you are doing something to help someone come up with a cure! I pray it comes soon. I am just blabbering, but just wanted you to know she is in our prayers.
We live just a few hours from the Grand Canyon, If you would like to see the sites, you are welcome to stay with us and show her the great wonders of Arizona.
Love,
Karin Peak

Fliss and Mike Adventures said...

You could have knocked me down with a feather when I read this... I cannot even begin to tell you just how much I wanted to cry when I read this. If I lived closer I would come do the walk with you all...

Hugs...