The little girl pictured above is named "Katie Grace", and she could die at any minute due to a rare condition called Pulmonary Hypertension, which requires her to get in line for a heart and lung transplant, and have tubes hooked up to her 24-hours-a-day, 7-days-a-week, possibly for the rest of her life. Katie's originally from Minnesota, but moved to Clayton to be closer to Stanford Hospital, where she's currently undergoing treatment.
Our fellow CLAYCORDIAN "Anna" first met Katie and her family at the Clayton Library, and tells us a little about her story....
In the photo you see she carries a backpack. The backpack is 24 hours a day IV medication to keep her alive. One can imagine the suffering this little girl (and family) goes through - even if she never complains, or they never speak about it.
Medication is $10,000 - $20,000 per month. Katie is still waiting for a heart/lung transplant.
After Katie Grace had been weak and ill all her life, the family recently received a diagnosis in February 2008.They took Katie in for surgery to "fix a hole in her heart" and thought that would be the end of it.
At that surgery, they received the worst possible news. The "hole in her heart" could not be repaired, rather it was pulmonary hypertension that would require a heart/lung transplant, constant IV and medication to keep her alive. All before little Katie Grace would even start Kindergarten. She just started Kindergarten at a local school in September of 2008.
"Anna" also writes about their move from Minnesota....
They appear to have left everything they have, job, family, friends, etc. to try life out here.
At first they didn't even have housing. They were driving around in an RV - that they purchased after selling much of their belongings in Minnesota.
Just meeting random community members have guided them to a rental home in Clayton. Looks like a church member offered them to stay on some property near the Clayton Christmas Tree Farm on Pine Street.
It's very tragic that any child has to go through this ordeal, but hopefully Katie will get what she needs and live a healthy life.
I'll keep everybody updated on her condition. Thanks to "Anna" for the information on the sweet little girl.
To learn more about National Pulmonary Hypertension Month (November), you can visit Katie Grace's website by clicking HERE.
Or, you can email the family to wish them well by clicking HERE.
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36 comments:
As the mom of a daughter also named Katie Grace, I can only imagine the pain she and her family are experiencing. It's heartening to see the community stepping forward to support them. Please let us know what we can do to help as well!
It's stories like these that make my problems not really problems at all.
I have a daughter around the same age- we seem to live only blocks away. Please let me know if I can donate clothing, toys, books, anything we can give to make life maybe a little easier.
Something should be organized for the family to help their situation, I would love to help if possible.
Thanks for putting out this story for us. Prayers for Katie and her family. Anon 10:39 is right; this sure puts life's little hassles in perspective!
Thanks Mayor! Prayers to Katie Grace and her family. I hope to see the community come together with better awareness of PH.
May Katie Grace's life receive extra sunshine today!
Does anyone know the best way to organize a fundraiser. Maybe to help with medical bills and housing cost? I am a stay at home mom and have sometime to help in any way.
Good luck little girl. I will pray for you and your family.
Wow talk about perspective. This story makes my End Stage Kidney Failure at the young age of 44 Not seem so bad. I do know that being on a list for a organ transplant is not fun. It is a long and tedious wait. It has to be a hundred times worse if you are only 5. At least I have dialysis to keep me alive while I wait for a new Kidney. My prayers go out for Katie.
Newspaper in Minnesota:
http://www.mankatofreepress.com/local/local_story_119003916.html?keyword=topstory
My brother needed a transplant
Many, many people are in line, it's very disheartening. He died just before he was to get one. I saw a little baby with a pack like that and I was told it was to help him live. Many people have conditions we are unaware of and so we should be kinder to everyone.
I just hope children don't tease her, that is the worst.
Kens Freedom Said. I don't know much about folks waiting for a kidney. You mentioned you are on a list? What does it involve? Do they usually hope to use a family member?
Today my biggest concern is where are we are going to get the money to do urgent home repairs and paint both the interior and exterior of our home. After reading about Katie Grace I don't think I'll worry too much. Mr. Mayor be sure to let us all know if there is anything we can do to help ok?
$10k to $20k a month to keep her alive??? Don't people wonder why it costs so much? When it comes to people's health, there shouldn't be a price tag attached. But this is America, the land of greed.
I say the family moves to Cuba where it wouldn't cost thousands of dollars for medication, IV, etc. No family or child should have to go through this.
I know theres no way to repair her heart, but is there any way that she can get a new one and live on? If so, would the parents be able to afford it to save their little girl's life?
" But this is America, the land of greed."
Yeah-- the pill companies don't ahve millions in costs to get a medication to market? You have no clue.
"I say the family moves to Cuba where it wouldn't cost thousands of dollars for medication, IV, etc. No family or child should have to go through this."
Sure-- An American can just fly down there & get free help. No way. How about Shriners Hospital? NO cost there.
oh my god. this girl is in dire need and all you losers can do is bash big pharma and how cuba is so much better (then freakin move there if you think it's so bad here). All of the above comments were so beautiful and heartfelt, then you have to get into the political aspect of things - give me a break. A friend of mine just lost his two year old girl to a rare disease and they are devastated.
Life is a beautiful thing and losing a child would be one of the worst things that could happen.
before you continue to hate america, read the first few comments and get a perspective on life.
I think the comments on America are relevant. Especially right now. Here is a real example of someone who would be affected by the upcoming election and the candidates healthcare policy.
THANK YOU Mr. Mayor for finally doing a post in relation to organ transplantation.
This is what EVERYONE can do today! Log onto www.donatelifecalifornia.org. This will register you to become an organ donor. Signing up with the DMV isn't enough. Also, talk to your family about your wishes. Wouldn't it be horrible for your mother, brother, husband, child to make the decision whether or not to donate your organs in the midst of some tragedy?
As for this beautiful girl, Katie Grace, may God grant you and your family the chance at a healthy life. Your strength is an inspiration to us all!! You will all be in my prayers.
Please Mr. Mayor - let us know what we can do to help this family.
Anon 12:50 Thank you we need to focus how how we who live here can help.
What a heart wrenching story. We'll pray for you Katie Grace.
From what I understand Stanford is the best place in the US for this type of thing. My sister-in-law's step sister and husband have a little boy who had heart issues. They too moved here from Minnesota, luckiy they were able to transfer with their jobs, to have their son treated at Stanford. They found out about their son's heart issues before he was born.
So I understand why the family came here from Minnesota.
I hope and pray Katie Grace gets the transplant she needs.
God this breaks my hears! I have a little girl too and whenever I see anything sad like this I am always so thankful that my kids came out with full health and are great little beings. This girl looks so precious and I will definately be open to donating anything this family needs. I am very happy to be well off and this that we should set up something for this family if thats not already been done. If everyone of concord just donated 10 dollars to this family they would have enough for this girl for 10 years and hopefully will get that transplant before than! I cant get over how sad her little face makes me.
Obama will fix everything..... NOT
Set it up I will donate. The weather is turning but but We might get a couple of weekends for a golf tournement. Oakhurst Country Club should be given a picture of this beautiful little girl. They may have some suggestions.
When I was born in 1977, I had 2 holes in my heart. Both, thankfully, were repaired on St. Patrick's day in 1980. When I was diagnosed, I was originally sent to Children's Hospital in Oakland, but they suck. I was then sent to Stanford Medical Center where I underwent open heart surgery to fix them. The surgery now is done with a small incision in the armpit. I was fortunate that mine were repairable. I can't imagine how hard it would be on my parents and me if they weren't repairable. That said, I can't think of a better place to have my loved one to undergo surgery. This story is tragic, but you are in very good hands at Stanford. Good luck and be well.
My sister was diagnosed with a hole in her heart at age 68... imagine that! She had it repaired and still going strong at 75. I think this little girl should get another opinion, with the miracles of science her hole should be able to be repaired by an expert. Stanford is good, but I bet there is better out there. A transplant seems extreme and risky.
I would like to help with a fundraiser too. Maybe the family can let us know what ways we could possibly help. I read the article from the newspaper in Minnesota. That gave ideas on what a fundraiser was like out there.
http://www.mankatofreepress.com/local/local_story_119003916.html?keyword=topstory
It would be great to be able to duplicate something like that!
God Bless Her
Isn't there a Mayo Clinic in Minnesota? I heard they were one of the best places to go. Has anyone heard of that and if so, is Stanford better than the Mayo Clinic?
God Bless this little girl. I will keep her in my prayers until she is healed.
What a precious little girl. Heartbreaking story yet she seems so resiliant. I see alot of people who are willing to help and you can. Here is how. Sign up today to be an organ donor. I so much appreciate the information about where to sign up in a previous posting. Thank You Mrs K!!! I will do it now. I thought the little pink dot would cover me. I need to do more. At any time anyone one of us can be taken away. A gift of life as we pass is decent, honorable and heroic. And you WOULD be helping someone JUST LIKE Katie Grace. Give blood. Blood Centers of the Pacific in Shadelands Business Park has regular hours. 4 times a year 45 minutes. DO SOMETHING PEOPLE!!! Oh....and yeah I'd love to give to a fund to help this young girl and her family get back home safe and healthy to Minnesooooooda! God Bless America.
VOTE Nov 4th
Stanford is the best as far as cardiology goes. There is no better cardiology/pulminary hospital in the country especially for children. That's why so many people go there.
My name is summer and i am the older sister of this little girl. I live in georgia and i am so heartbroken that i cant be with my family through all of this. She is truely a remarkable girl. And to whomever said "Obama will fix this...NOT" what is your problem? Why you would take your time to write something like that on a blog so serious i cant fathom. Anyways thank you all for your prayers and support. If you want more information on how you can help or anything please go to www.caringbridge.org/visit/katiegrace. Thank you all again and god bless
Summer - Thank you for posting. You, your family and Katie Grace are in my prayers.
Summer - Thank you for posting. You, your family and Katie Grace are in my prayers.
Summer - Thank you for posting. You, your family and Katie Grace are in my prayers.
To Anonymous from 11-3 who said: "My sister was diagnosed with a hole in her heart at age 68... imagine that! She had it repaired and still going strong at 75. I think this little girl should get another opinion..."
It said up there that they THOUGHT this was a hole in her heart, but they found differently when surgery was attempted. Pulmonary HTN is not the same as any hole your sister had in her heart. Getting another opinion would be a waste of time. They are doing the right thing.
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