A dear friend of mine, Lori, has just discovered that her daughter Katie Starr has Cone-Rod Dystrophy, a disease which will eventually rob her of her sight. To receive this diagnosis for your child is unimaginably heart-wrenching. My heart goes out to sweet Katie Starr and to the whole family, and I’m hoping to raise awareness and generate as much help as possible by posting an excerpt of Lori’s message here:
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I am a mother like many of you; a mother to three amazing children. Our Katie Starr was diagnosed last week with Cone-Rod Dystrophy; a hereditary retinal disorder that will rob her of her sight and leave her in darkness. First the cones in her eyes will be destroyed and thus her light and color perception and then the rods will follow which are for night and peripheral vision. We do not have a time line but we understand that the earlier you are diagnosed then the chances are the earlier the sight will ebb away. It is a rare disease; one of many such retinal disorders that remain without a cure.
The Foundation Fighting Blindness has 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 five days we have a team of people joining us to walk in solidarity but also over $4,000.00 in donations.
You can make a donation of ANY amount at the following link or join us for the walk: TEAM KATIE STARR
Thank you so much for reading this and sharing it with others. You never know who may read it and how it can alter the course of one little girl’s life and many others in her shoes. As cliche as it sounds, together we can make a change and bring light into people's lives.
Lori Weinstock / Our family website is Stress Is the New Black
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Done. I am a survivor of a very random retinal virus that stole my sight at 14, and by the sheer grace of God, I recovered 80% of my vision by the end of high school. I'm certain it was much harder on my Mother than it was on me, and now that Sara is 5, I cannot imagine going through such an ordeal like hereditary blindness. My prayers are going to Katie Starr right now.
ReplyDeleteI am so glad to see this on this blog. I also know Lori and I believe that we all need to help. Katie is such a sweet girl.
ReplyDeleteGladis
Bless you for posting this. It really is unimaginable!
ReplyDeleteyour in our prayers!! if there is ever a 5k in indiana, let me know! (my email is animal.musicluver123@gmail.com) im on a cross country team that would love to help! we could make donations and then run for your daughter. (i am 14)
ReplyDeleteYou are an angel on earth M3!! Love you for all that you are doing to raise awareness. You rock!! xxoo
ReplyDeleteLori
The Katie Starr Team :)
Did you send an email with no subject and a link to fast man ( or some such?)
ReplyDeleteI think I've got a computer virus! Ugh. My system sent out a whole bunch of bogus emails today. If you got anything from me, please don't click on it. I've shut everything down and am waiting for Tubadad to fix.
ReplyDeleteI was going to send yout he link I'm so happy you are getting the word out for our sweet little Starr!
ReplyDelete