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No it’s not for me. It’s for my brother and sister in law and there precious baby, Bella (not her real name). As most of you know, they had a precious baby girl on October 17th that was born with Penta X Syndrome (a very rare chromosomal disorder). Bella is one of 24 babies in the world with this and one of two in the US.
This particular syndrome has many complications. One of them being heart defects. Bella, was born with four holes in her heart and has been suffering from congestive heart failure since her birth. In addition to the heart defects, she was also born with several of her bones fused in her arms and her feet which will eventually require surgery. Bella was also born with malrotation of the intestines which was repaired in February.
Bella, is on a feeding tube because she can not suck a bottle due to her severe congestive heart failure. Although, this little angel has been making progress these last six months there is still a long way to go. She will require medical care all her life.
Today she was admitted to a children's hospital to prepare for her open heart surgery tomorrow. The doctors will close only two of the holes. The other two are difficult to get to and therefore will be left alone for now. The hope is that those holes will someday close on there own.
Adam and Cheryl are handling this as best they can. It’s hard to see your little one deal with all that life has dealt her. I know, I speak from experience. Not only are they suffering from heartache for their little girl they are struggling financially. My brother is in construction and because of the economy, he has not had any work since she was born. And no work, means no food on the table, no bills being paid, no mortgage being paid. Insurance is astronomical for them. Cheryl can’t work since Bella needs constant care.
They so desperately need help financially. Not only that but they need to know that there are people who do care about them and are praying for them. That means so much to them to receive cards of encouragement from my readers. You should have seen there faces during Christmas when I gave them packages and many many letters from all over the world encouraging them. The tears were genuine and they send all of you their heart felt thanks. We have had plans to video their family but my camera died. But one of these days you will get to hear their honest unedited thanks and appreciation to all of you.
I encourage you to keep them in your prayers especially tomorrow as she under goes open heart surgery. You are more than welcome to send them a card or even contribute to help them pay for her medical bills and formula. Feel free to email me if you would like the address.
Tiffanie
10 comments:
Tiff I will be praying for them {{{{hugs}}} for all.
I will be thinking of your family and praying deeply in New Hampshire.
I will be sure and RETWEET this on TWITTER @CheckupToday -- Hang in there.
They all will be in my prayers tomorrow!
I'll be praying for you all today.
She is so precious. My thoughts and prayers go out to them all. I wish her a smooth surgery and recovery.
You and your family are in my prayers...I am sending baby Bella lots of {{{HUGS}}}.
My heart goes out to your family, and I hope all went well with the surgery today. What a sweet little angel.
I will be sending them hugs and good thoughts from Seven Hills, OH. Their little one is sooooo beautiful! I pray that things get better for them all.
Pls tell them there's a whole universe out there praying and hoping for them.
I will send out prayers for you and your family...I will also post your article on my blog to get word out. :)
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