Baby Lily Needs a Heart

Stephanie Parra is Petitioning the Transplant Board at Loma Linda University Childrens Hospital. 106,348 supporters so far; 43,652 needed to reach 150,000.
My daughter Lily is a born fighter. When she was still in my belly, my doctor told me Lily had a serious heart defect. Our doctor said it was so bad that Lily would likely not survive her first few hours, and that I might want to consider terminating the pregnancy. That was not an option. As her mother, I had to do everything I could to give her a fighting chance, however slim that chance was. And fight she did -- hours have turned into months, and Lily is still with us. She keeps on fighting.

But now we have another battle on our hands, and I need all of you to help me win it: After doctors realized she would need a transplant and she was put through a battery of tests, she was put on the transplant list so she could get a healthy heart. But soon afterwards, they discovered her brain wasn't growing as fast as they would have liked, and our doctors said they were taking her off the list because there was the potential for being "developmentally delayed".

I was so shocked, I had them repeat themselves to be sure I hadn't misunderstood. They weren’t taking her off the transplant list because she wouldn’t survive; they were removing her because she might have developmental issues. That is no reason to take someone off the donor list.

From the bottom of my heart, I am asking you to join me in demanding that Loma Linda Children’s Hospital (LLCH) put Lily back on the transplant list and let her have a shot at life.

My daughter is a blessing, whether she has developmental issues or not. In fact, there are millions of parents just like my husband and I who can attest that their child is perfect and they wouldn’t have them any other way. The fact that someone is disabled doesn’t mean they are less deserving of a chance at life, and I refuse to let LLCH take that chance away from Lily.

Every life is valuable, and everyone who has the chance to live a full one deserves it. Please join me, and demand that LLCH put Lily back on the list. Her life could depend on it.

This petition will be delivered to: Transplant Board at Loma Linda University Childrens Hospital.
Apr 16, 2016 — OUR BIRTHDAY GIRL - Thank you lord for blessing us with Lily. Click Here!

106,348 supporters so far; 43,652 needed to reach 150,000.

Apr 14, 2016 — There's nothing worse then feeling helpless, especially when it's helpless to help an innocent child and even more so when it's your own innocent child.

I was recently told a story by an amazing man about a 7 yr old little boy who was fighting with a recurrence of leukemia that broke my heart.

Unfortunately nothing doctors did could slow down the course of this devastating disease despite all we know about cancer. 

Day after day this little boys doctor watched him bravely face numerous pokes and procedures. One morning fighting back his own tears his doctor placed in yet another IV. 

The little boy realizing his doctor had tears in his eyes looked up, gave his doctor a hug and said, "it's going to be okay." It was at that moment that his doctor realized that some of us are here as students and some come as teachers. This little boy was a teacher. 

Battling with doctors day after day who are so quickly willing to help me end my baby's life but are willing to do nothing to help me save her life has recently made me question my own faith. 

Why would God do this to my baby or to any innocent baby I wondered? 

Then I realized, that in spite of all the frustration and heartache I've faced I'd actually been blessed

I've been blessed with the honor of being Lily's mommy. I was blessed to give birth to lily and have been blessed to watch her grow. No matter what the length of time maybe that we have together I treasure every moment that God blesses us to have with her. 

This little boys Doctor is absolutely right about some of us being here as teachers.

Lily's story has touched many people around the world and has opened my eyes to the discrimination innocent special needs infants,children and adults frequently face.

I am not asking for special treatment for Lily. I'm asking for her to be given a chance. The same chance as any other child who needs a transplant. 

A place back on the transplant list.

Lily's has obstacles ahead of her that are truly out of our control in getting a donor match for her. Her blood type is O+, so she can only receive a heart from an O+ donor. She's four months old, so she can only receive a heart from an O+ infant heart donor. So realistically her chances of getting a donor heart are very slim. Her developmental disability shouldn't be an automatic disqualifying factor. I trust in God whole heartedly and I know he will provide a heart for Lily if that is his plan for her. 

Discrimination in any way shape or form is not acceptable and should not be tolerated. To often our special needs loved ones are considered less deserving "defective" or thought to have less of a quality of life then those who don't have special needs. 

That is NOT a true fact. Fact is special needs individuals can become productive members of society. They are full of love, joy and compassion. They don't judge people based on looks, how much money they have or how you may benefit them. They're not spiteful, vindictive or vengeful. They see people for who and what they really are. Fact is many people can learn a thing or two from them. 

On Thursday I met with Lily's genetic doctor at Loma Linda Dr. Clark.

Dr. Clark told me that Lily truly is one of a kind. She is the only person to have 2p21 deletion (A Chromosomal abnormality) of only 94k genes ever reported in the world. 

The deletion is so small that it's not detected unless you are specifically looking for it. There is no known research or information on this size deletion so there is no way of knowing how this deletion may or may not affect Lily's longevity. 

Dr. Clark asked if she could discuss Lily at an up coming conference she's attending and if I'd be willing to allow her to do further research.

I'd do anything to help prevent another family from feeling the heart ache mine is so I agreed. 

I finally was able to get all of Lily's medical records (thank you so very much to everyone who helped point me in the right direction) I went over every single page (over 500) and have noted many inconsistencies. One inconsistency that stood out was in relation to her kidneys. The results of her ultrasound that was preformed states "NORMAL FINDINGS" just below that is the impressions by the doctor were it states "small kidneys".??? She has also been diagnosed with an epileptic seizure disorder yet she has NEVER had a seizure and has NEVER been on any seizure medication, also EVERY EEG has been negative for any seizure activity. So tomorrow Lily's doctors and I will be having a meeting for them to explain how and why they came to these conclusions if every test performed proves other wise....I'd like to thank each and every person for all your continued support, well wishes and prayers. My family and I are forever grateful to you all.

God Bless

Stephanie
Apr 9, 2016 — After 77 days I finally got to hold my baby again. Click Here!