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,

37 comments:

Whatshername's Mummy said...

Bless you all. I've been thinking about Katie all day. Not the result that anyone would want but knowing will help you to help her and that's the most important part.
Hugs from Wales,
Kate

M and M Girls said...

Not the result we wanted to hear. I am very sorry. If you need anything let me say the world.

(((hugs))) and love
Diane and the girls

Kate said...

I am devastated with you. I am so so sorry. I will be praying for you all.

LanMan said...

We send our love, big hugs and prayers.

love, the Greenbaums

Gail said...

Lori, I'm so sorry that this is the diagnosis that came back. If there's anything I can do for you, please, please let me know.

You all continue to be in my prayers.

with love,

Gail

Bella Parties with Lisa said...

Oh my God, Lori, I am so sorry to hear this news. I can only imagine the devastation that you and Marc must be experiencing. My prayers for you two and for Katie will continue as you work your way through this. Hugs to you mama.

Vivian M said...

We all share your feelings right now and are sending all of our love, prayers and positive thoughts your way. I know this is hard to deal with, but you will all overcome this with the same grace and strength you have already shown in the past. I know in my heart that Katie will be just fine, and as sad as we are to hear of her condition, we are also positive that she will continue to surprise you with her amazing personality and ability to adapt.
Sending you our hugs over the miles, and wish we were closer to give them in person.
Love, Vivian, Corey and Kerri

Candy said...

I am so sorry to hear this news. I know you will do whatever you can for Katie. She is in the best hands with you and Marc.

I don't know what else to say except if there's anything we can do for you, please don't hesitate to call. We're right around the corner.

((((HUGS))))

Donna said...

Lori, my heart is aching for Katie and all of the people who love her. This is very sad news. With her family's love and support and encouragement, she'll have a happy and fulfilling life and I'm sure she'll accomplish great things.

I'm going to send you an email.

::::hugs::::

Donna
Our Blog: Double Happiness!

Teresa said...

Oh No! My heart aches for you. Such sad news. Praying for a miracle or a cure. I have no other words, my heart is just grieving.

Jen said...

oh Lori, I am so sorry you have this bad news. We will pray for your family. Panda hugs!!

sewing jen and gang

Suz said...

My heart is with you and Marc and the kiddos. No words. This is really tough. Take time to grieve if you need to, but in time you are still going to have to keep running fast to keep up with that girl.

Love you,
Suzanne

Chris said...

Lori,
I haven't been keeping up real well, Jen clued me in. Hugs and prayers for you and your family.

Carol and Taylor said...

I wish I had words of comfort for your family, but I am at a loss. I hope that you all can find peace in the coming days.

Love,

Carol and Taylor

ZhangshuMom said...

Oh sweetie! I am so, so sorry! I just can't even begin to imagine what you and Marc are feeling right now! Let alone Justin, Judy and the entire family! You are a very strong, faith filled family. And I know your faith will guide you to do whatever is possible. Please know that we will keep Katie in our prayers. Know that we love you. and that we are here to support YOU just as YOU have always been there for all of US! You are NOT walking this journey alone my friend!
Love, Donna and Catherine

Diana said...

I am in tears as I read this..I god had a plan when he "picked" us to parent our kids and you and your husband are the perfect parents for Katie to get through this. You are a AMAZING family and you have so much love for your kids. Hugs to all of you:)

Kelley said...

Praying for you all...so sorry that you didn't get better news!

Tammie said...

I am so sorry that this is the result of Katie Starr's tests. My heart is aching for all of you.

Please know that your friends & family will be there as you go on this journey.

Doug and Terrye said...

Lori, I'm so sorry. Words fail me right now, but my heart goes out to you and especially sweet little Katie!

Terrye in FL

Invisible Hands said...

Lori and Marc....... I'm sorry to read this update from you. I feel my heart breaking and I know your sorrow is even greater. So much we don't understand. People come into our lives and we don't have any idea of where the journey will take us all. You have surrounded yourself with such a rich array of people. Katie will never lack for love or quality of life. She may show us all things we could not see with our earthly eyes. Praying for you all each day.

sherri and Mark

norie said...

oh lori...thought of your family all day today and am devastated by this news...will continue to uplift you..

norie

epin said...

I am so sorry to hear this news. You, Katie, and your family will be in my thoughts.

dawn said...

Lori, Marc and Family. this just isn't the news anybody wanted to hear and as you process this we want you to know we are right here if you need us.
love us.

Beckyb said...

Whenever you feel like - I'd love for you to email me. It may not be right now and that's ok - but when you want to talk, I am here. Our Jada was also born with an eye condition - Aniridia - no irises. Her vision will also continue to deteriorate - it hurts SO much as her mom - I feel your pain. Praying....

Cyndi said...

We're always here, for ALL of you, if there's anything you need....sending our love and hugs for now....
The Crokers

DawnS said...

I am so sad to hear this, I was hoping more than anything that this would not be the news that you would get! I am so sorry, but also know that Katie has the best possible family to help her through this!

Ann in Ottawa said...

Lori, I just found your site in the last week and cannot believe this development. But I know she has a Mommy that help her have an incredible life. I live in Ottawa, and last week there was some great news from the Eye Institute at the University of Ottawa...I think you should get in touch with this scientist. http://www.washingtonpost.com/wp-dyn/content/article/2010
/08/25/AR2010082504976.html
Different disease but brilliant lady, If you ever come to Ottawa for a consult, you are my guest.

Anonymous said...

Lurker here - our daughters are the same age, and have been following you for quite a while. Just wanted to say that I am sorry, and will be keeping all of you in my thoughts.

Erika

RamblingMother said...

I am so sorry! Praying for you all. You know she is a survivor and will shine through this too.

Jackie said...

Lori,

I was just surfing and stumbled onto your site and I had to tell ya that my best friend at the age of 19 (in '81) was diagnosed with RP and told she would be blind by the time she was 30. She had much stress and anxiety all of her life, but at 48 years old, she is not blind and the progession stopped about ten years ago. Now, she does have difficulty, she can't see to read, is totally night blind, can't drive, no peripheral vision and is missing patches of sight, BUT she is a completely self-sufficient functioning adult.

Please don't give up hope or imagine the worst, just wait and SEE!

Jackie S.
www.onebullandhisheifers.blogspot.com

prechrswife said...

I'm a fellow China mom who lives in central Florida, and I followed your journey to Katie Starr website when you traveled to China. I just found out about your news through Angel M. on Facebook. I am so sorry... Know that there are prayers going up for you from our household.

t~ said...

Lori, I am saddened to hear about Katie's condition. I saw a link on FB and have been hopping around. Much love and prayers as you begin this new journey to help your beautiful girl~
xox

Wanda said...

Lori - I am so very sorry. I will be praying for peace with this horrible news and of course for her healing.

[[[hugs]]]

Gina said...

Lori,

My heart breaks as I read the sad news. I am praying all of you.

Michelle said...

I too am so sorry. Your family will be in my prayers.

M3 said...

Oh sweetie, I am so, so sorry. Those words just seem so insignificant but I don't know the right words. My heart just breaks for you guys and I'm sending you love and good thoughts.

Carroll said...

Oh, what a sad and scary diagnosis for any family to face!

FWIW, I used to be a reader for visually impaired students at Stanford. One of my favorites, completely blind, went on to become a doctor!

Katie's life will take you to places you never knew were possible emotionally, and through it all there will be complete strangers like me wishing you well!

She's a beautiful little girl, and so blessed to have found you for her family :-)