Wednesday, September 22, 2010

We are surrounded by love

I cannot explain to all of you how it feels to have so many friends and family buoy us up, support our cause to fund the research for a cure and make so many amazing offers to our daughter and our family. Quite simply, it is humbling.

We have had offers from friends to come for a visit to beautiful places all over the globe so that Katie can see brand new vistas that will sear into her mind's eye.

We have had friends do fund raising in their places of business for The Foundation Fighting Blindness in honor of Katie Starr.

We have a friend who owns two optometric locations where glasses are sold, offer to give Katie her first pair of prescription sunglasses as a gift and to allow us to purchase subsequent prescriptions to her lenses at their cost.

We have had one auction run for us by a woman who makes handmade children's clothing and now another friend is going to run her own online auction to benefit the foundation.

The Foundation has received donations from friends and strangers. Every single dollar of it shines brightly because of the love of a precious girl. One woman completely took me off balance today with a sizable donation paired with a message that she has been following my blog since the beginning and wanted to help out. What a tribute to our girl!

We have received invaluable information from many people and connections with other people that will prove very important to have in the future.

Our temple even made a decision, without our knowledge, to donate all of the money that they receive for Tzedakah from the preschool and religious school children for the entire school year and donate it to Foundation fighting Blindness in honor of our Starr.

Finally, I have asked over and over via facebook and the blog for help in getting the word out and each time dozens of our friends have answered the call to continue to spread the word; even at the risk of losing friendships from all of the messages. I have asked friends to blog about it and they have happily complied! Many friends are even walking with us and that means so much to us. We are truly soldiers fighting a war against time and I know that we can win it.

There are even more beautiful stories, these are just a sampling. We are completely overwhelmed!!

After this walk is over on October 23rd, I have even bigger plans for the next go round. The next event will be exciting, fun, memorable and it will bring us even closer to a cure.

Thank you all so much...I can never say it enough times and someday our daughter will not only know how many lives that she has touched but will also see how many have touched hers. My prayer is that she be able to look you all in the eye and see your beautiful faces when she thanks you. We are doing everything in our power to ensure that it happens!

Sunday, September 12, 2010

So much happening

It seems like we have had Katie's diagnosis of Cone-Rod Dystrophy for months instead of 10 days. So much has happened and so many wonderful people have become a part of the Katie Starr Team. It is much more than money that is driving this train. It is the awareness of hereditary blindness and other conditions that require stem cell research to find a cure.

I feel quite driven to keep this message out there and like I have said to so many already.....until a cure is found, we will not rest.

On another note, we need to begin putting together a plan for our girl. The first thing that we need to do is to speak to a proffessional about the proper way to share this very troubling information with Katie. We think she is too young to begin this discussion other than explaining to her as we make changes to her glasses and possibly the learning of alternative ways of acquiring information such as learning Braille, that her eyes are weak and these are the things that we do if that is the case. We may be wrong but we do not think that she is ready to absorb all of this and unless a therapist or someone that has been through this tells us otherwise and what the correct way to handle this may be.....well, we will not be telling her anytime soon. We want to preserve her innocence and knowledge of such a challenge for as long as we can.

We will be meeting with her Pediatric Opthamologist soon to discuss the reports in greater detail and then we will discuss what the first steps will be. Once that is done we will form an educational framework for her. I pray that the school that she is in right now has the resources that may be needed for her. If they do not, then she will need to be moved to another school and that will just break my heart. I want for her to be in the same school as Ethan. They love being in the same school so much!

We have been so gratified and so humbled by the friendship and support that we have received from friends and family. I have been quite a pest with the links that I share but everyone has been more than wonderful to keep passing them along. Communication is truly power! Through all of the sharing of this information from friend to friend, I have been placed in touch with people that have the same condition, found out that the Foundation Fighting Blindness is headed by the friend of a friend who will be in touch with me this week, also been in touch with the regional director of the same organization, who was so impressed by my fund raising ferocity that she wants to meet with me this week to find out about how I am getting the word out and finally a synopsis of Katie Starr's story was placed on's homepage (here is the link).

I remember reading this quote once and it has always stuck with me:

“The bravest battle that ever was fought; Shall I tell you where and when? On the maps of the world you will find it not; It was fought by the mothers of men”

There is nothing that I would not do for my family. I am a mama that is waging a war on behalf of my daughter; the amazing Katie Starr! Please become part of my army!

Thursday, September 09, 2010

The word is getting out!

I have been sharing the link to our 5K walk team for the Foundation Fighting blindness constantly on facebook and asking others to do the same. Each day I look at my facebook and I am humbled by the outpouring of friendship and support for Katie, us and the cause of raising money and awareness so that research can continue for Hereditary Retinal Diseases.

Two of my friends are avid shoppers of children's clothing (Mostly one of a kind handmade outfits.) Angel and Mary are fellow adoptive mamas that I have known since early 2005 when we were all just beginning the journey of adoption. They have always been there for us as friends and it did not surprise me one bit that they would be kind enough to post my link on their facebooks. One of their posts caught the attention of Ashley Hackshaw, the owner of
Lil Blue Boo , an online boutique specializing in one of a kind handmade children's clothing. Ashley, who obviously has as big of a heart as her talent, offered to auction off one of her beautiful handmade creations on behalf of Katie Starr to help fund this cause.

My lucky Starr is the name of her creation and there have already been 18 bids on it! It still has 4 days to go. Please take a look at it as well as all of Ashley's beautiful clothing. This is a woman who gives back and she should reap rewards for her kindness.

We are so touched and honored by all of the amazing people in our lives. Thank you to those that have extended themselves in love from the bottom of our hearts!

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 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 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,

Wednesday, September 01, 2010

The news is not good

I am quickly updating to let all who know and care that we have the results of Katie's Electroretinography. Katie has a disease of the eyes called Cone-Rod Dystrophy which is in the same family as Retinitis Pigmentosa. This is an inherited disease that was passed down to her via both birth parents who would have been carriers of the gene. It is a rare disease as it would take two such carriers to pass it. This disease will rob her of her sight. There is no intervention or cure for it at this time. We are devastated right now as you can well imagine. Once we speak to her Doctor next week we will get a better understanding of how this may progress.

Thank you to all who have called, texted, left messages and sent their love and prayers. We appreciate all of it so much. When I can formulate a cohesive thought I will be back, but in the meantime I just wanted to let all who have cared so much know what the results of the test were.

Much love,