This will be a short post today because I have written in-depth about Saving Eliza before in my post The Last 365. When I wrote the last blog, her parents were still hopeful. They had months to raise the remaining funds and Eliza was not showing any symptoms of degeneration. They began a social media challenge (#sing2lines) in order to raise awareness and funds. If everyone reading this gave $25, we could save her life today.
But today I was heartbroken anew. An article on People.com shared that she is losing words. I cannot imagine watching my child be slowly erased by a missing gene, knowing every step backward is a step towards a prolonged deterioration and painful death.
The treatment is sitting in a hospital in Ohio, the FDA is in the process of approving this very unique trial, but the trial hasn’t been funded. From my understanding, there is a deadline of the end of October to get this funded in order for it to start in January.
I am reminded of being in the NICU when my daughter was born. Every three hours we got to scrub up, don gowns, and have 30 minutes to change her diaper, hold her, feed her. But it was on a schedule – 8 a.m., 11 a.m., 2 p.m., 5 p.m., 8 p.m. If a physician was making NICU rounds or another child was having a crisis, no one was allowed inside.
During the week we were there, twice we rushed excitedly through the hospital only to be turned away. Standing at the door of the NICU, there was no reprieve, no one to appeal to, just a sign letting us know to try again at the next visiting time. My baby was on the other side of that door. I wanted to break it down, be the exception, get to my child. Inside I felt like a momma bear raging as I walked away dejectedly, trying not to cry until the privacy of the elevator.
I can only imagine how the O’Neills are feeling. They are standing on this side of that door figuratively, knowing their daughter is gradually being pulled away from them. They have given every thought and moment to fighting for her, but are losing the fight.
They are clinging to hope, and their efforts are raising money. $15, $20, $40 come in one at a time from anonymous people just trying to do what they can, but it is slow, and the days are running out for sweet Eliza. Her abilities to focus and speak are already noticeably affected.
If this gene therapy trial is effective, it could save her life, but literally every single day is doing permanent damage. Funding this trial now is absolutely the only hope to save Eliza. Any delay will make it too late for Eliza.
Too late. We use the words too late for the ice cream truck that turned the corner before we found our change purse; too late when we miss the start of a movie by more than the length of the previews; too late to go to a friend’s house last-minute. No one should ever have to use these words to describe saving a child.
Why is this on my heart? Why do I share every post and tweet? I just remember Jesus speaking to his followers about how he sees children.
Matthew 18:5 ESV “Whoever receives one such child in my name receives me”
There is nothing I wouldn’t do for Jesus, and if I can serve Him by helping care for this little angel and her family, then I’ll do whatever is in my strength and ability to do.
Please join the movement, #SING2LINES for #SavingEliza, share this blog or her cause on every forum you can. Give whatever you can. If everyone who read my first post had donated a single $1, we would have raised over $15,000. Make this go viral, we have to do something before it is too late.