She is the child and Grandchild of friends of mine...
In-utero she was diagnosed with "Short bowel syndrome".
Cadence is 9 months old and needs a liver, pancreas, and intestine transplant.
She's had several surgeries already- and we've nearly lost her twice...she qualified for the transplant last week at the Children's hospital in Ohio. We are thrilled she qualified for the transplant, but acutely aware of how serious the upcoming months will be. The strain on the family is enormous- mentally, financially, and emotionally.
Her family has asked me to consider being the Public Relations Coordinator for her fundraising, and I happily said I would.
In the coming weeks this will be my focus...raising awareness about her illness and letting people know about events being held in her honor to benefit her family.
If you are a praying person, I'd ask you add this little one, and her mom, to your list~ A web site is being created for her and I'll add the link when I have it.
I know this won't take all of my time, but it does seem to consume a lot of my thoughts. Knowing this child and her family is a blessing...and being mindful of what they are going through makes all of my problems seem incredibly small.
"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving and tolerant of the weak and strong. Because someday in life you will have been all of these."
-George Washington Carver:
29 comments:
a lovely child ... and a sad story. my heart goes out to this family. best wishes to you in this latest endeavour. cadence~yet another humbling reminder that we do not control life.
enjoy your weekend.
I will pray too for this little one.
You, and the precious little one along with her family are in my prayers. There is nothing worse than to know a small child is suffering.
My prayers are with her. Let me know if donations are needed, I'll send a little something.
Thanks for giving of yourself for her.
I know I take babies being healthy for granted. It is really a miracle when they are born with no problems. It really breaks my heart to see such a lovely girl with so many problems right out of the gate...
She is a little cutie. And it breaks my heart to learn what she's gone though already in life.
I'm personally no stranger to Children's Hospital in Ohio. She's in good hands, and I believe she will recover and lead a reasonably healthy life.
The funding of her treatment is what makes me anxious. We'll pay attention to your links and the website once up. Perhaps if there are buttons for donations, we can add them to our sidebars.
She and her family are in my prayers..I'll be watching for teh website..perhaps you would want to set up a PAYPAL account for accepting contributions..just a thought.
HUGS and Prayers
Mantissa-
Thanks friend...yes- another reminder. It hs been beautiful here- hubs and kids are well- I couldn't ask for much more :)
T- Welcome to MV, and thank you~ I appreciate your prayers on their behalf...I know it changes things.
Bar29- Thank you friend :) There are so many kids who suffer- and the ones without a support group...I can't imagine how they manage~
Malinda, friend, thank you so much. I will post the link as soon as I have it- but your heart in this matter really touches me-
you blessed me today~
Phos- "So many problems right out of the gate"- you said it. We knew from early on this was going to be serious, but the Dr. said her intestines were the worst he'd ever seen...like a string of pearls- they were so messed up. The fact she is still with us is a testament to her strength- and the amazing love the surrounds her.
Thanks for your words here-
Pug- yes...she is adorable, and it's awful- and we love her. No matter what happens- this child was loved deeply before she was born- and will ever be loved-
Hugs pug :)
X~
Thank you friend...great idea. I will be sure to talk to the team about that on Tuesday night when we meet. I don't know much about the Children's hospital- so it does my heart good to hear you say positive things about it.
We are hoping and praying for the best- thank you for being here.
This was the big project I was talking about...
Leelee- thank you :) I so appreciate your thoughts and prayers. I'll keep you posted- I promise :) Hugs to you too :)
my thoughts and prayers are with cadence, her family and you in your efforts, mayden.
Praying, for her and a thousand others. Thats so easy for me to say and do, so I recognize your more specific burden and your commitment and it causes me to admire you.
Are you taking donations? She is so lovely and full of life, I would hate to see anything happen to her.
mayden she's in good hands with you as an advocate. i know you will git r done.
You be one admirable lady, Mrs.C. You be one of the few peeps that me knows who's heart is big enough to help this little child.
P.S. the post office told me they are holding a package for me.
No matter how heavy we think our own burdens are....
My praying life has been stressed out, but I will pray for this child.
Although I am not a praying type of person. I do hope that you will be successful in your endeavor to help this child.
The power of love has in it, the ability to bring those together who can do this thing. Never lose faith.
my heart and prayers go out to this family.
cora,
that was me btw on the phone. i left you a message.
:)
~chesca
Just a while ago my husband and I where talking about a two year old baby here who accidentally swallowed something poisonous...Funds too are being raised for her...It's heart breaking...more heart breaking when it's the youngest of the little who are suffering. My prayers go to this child. The most painful feeling ever is the pain of seeing your child suffering..my synpathies too to her parents and entire family.
And as to my house moving....it will still take place in July...We are preparing very well for this and some things need to flow smoothly first before we hie off. I'm excited though..I like the place where we will move at!...Am excited about your package too!...Would I love to see the look in the face of my family when I get it...hee!..hee!
I will keep her in my thoughts. Let us know when you have the link I'll love to help.
You are doing an extraordinary thing for her.
I get sad when I hear about a child that has problems like this or is in need of help. What makes me sad is that with all the technonogy we have in the world today, there are still some things that are priceless. I will pray for her too.
Greg
I am sorry to read this, Cora. Unfortunately I spent most of yesterday at a children's hospital: my cousin's daughter Emma has been ill, but thankfully she is going to be ok. I dont know whether to cry when I am in a pediatric ward or scream at the injustice. I will say a prayer. xoxo
prayers, endless prayers....
Foam- thank you...I've sent you an emaill about another matter- you inspire me with your mom.
Seven-
That means a lot to me, coming from you. Thank you.
Phos-
Yes, we will be taking donations- I'll post the link this week. (we have a meeting tonight)- you are a dear to ask me.
Our first fundraiser is scheduled for next month...a concert :)
She- Thank you friend...for your words here, and elsewhere~
Scary Monster- Thanks friend :) Let me know when you see "Cabo"- I hope he didn't get sqished on the journey~
Iamnot..."Sigh" I met with the her grandparents last night...oh- the sadness and gratitude were tangible in the room last night. Broke my heart all over again~
Susan...your prayers are a blessing- I hope you know that.
NYD- SO good to see you~ Prayer is just love, spoken out-loud. Thank you for being here :)
Chesca- I thought that was you! I will call you back...I'm sorry I've been so busy. :)
Lux- Friend, my goal is to mail the package today :) Hugs :)
SJ- Thank you~ really~
Greg- I know some would argue against such extreme measures...a multi-organ transplant is dangerous, but this child hangs on-laughing and joyful...she is everything glorious and wonderful about the human spirit- she is thriving when others would not.
Every day with her is a gift to her family...
And a reminder to me to be so thankful.
Thank you for your prayers and thoughts...honestly.
Amy- "Cry or scream"- "Sigh" I know, I know...and yet- as hard as it is to explain, I know there is a reason- and there are times when those reasons will never be understood by the likes of me.
My prayers are with Emma too...and I'm thankful she will be ok.
Thank you for your heart in this...I appreciate your thoughts and prayers~
Singleton...thank you so much. Welcome to Mayden's Voyage...pleasure to see you here :)
indeed, there is something worse than a child's suffering - that of her parents. by far. been there, done that. it breaks my heart even thinking about it.
godspeed to them.
How's things going?
I hope all goes well for her, she is in for a lot of proceedures that are not very pleasant. I lost a kidney at 16, and have had a lifetime of Dr's, so I know first hand.
She may look healthy, but I can tell from the telltale yellow in the whites of her eyes, that her liver is in danger. Short bowel syndrome due to having some surgically removed is bad, but not always life threatening, what it sounds like she has is something like, Intestinal volvulus, Intestinal atresia, or Intestinal malrotation and gastroschisis . Far more serious and life threatening. I can only imagine what her mother is going through. Nick had a bowel obstruction at age 5, life threatening, and had six inches removed from his bowel, he is doing well, he is 12 now.. Not fun......but Children's hospital's are wonderful and they allow a very "hands on approach to medicine, with the parents." Which makes you feel useful and not so helpless. They tought me how to change Nick's stomach tube, so he would get it changed more often than having to wait for a nurse to do it. Luckily we had insurance.....
I will go and check out her Cota page......
Nea- You are totally correct-
and you know what you are talking about. Gastroschisis and liver failure from the TPN is, in fact, the rest of the story...
The further I work with this- the more daunting I realize it is...and heart breaking too.
However, the one thing I keep coming back to- regardless of how much time she has- or what the future holds- is that we have today- and each day is valuable.
So...I try to focus on this moment, the ones we have- and work accordingly.
Thanks for your words here- and your understanding. You totally "get" what we are facing.
I am so glad Nick is well- and your words about the Children's Hospital are encouraging.
Thank you~
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