18 months ago, I wrote about my brother’s niece Florence.
Florence is Thalia’s age. Her mom and my sister-in-law and I were all pregnant at the same time, comparing belly growth and whining about nausea. Florence was a perfectly normal, sweet, funny baby and then toddler – I still remember the first time my girls, and my brother’s two girls, and Florence and her sister all raced around the backyard together as we all cooed and ahhed at all that lovely estrogen, and imagined what they’d be like as teenagers, borrowing mascaras and comparing boyfriend stories and pretty much scaring the crap out of us.
And then Florence turned 20 months. She started to have tremors.
Later, she started limping. Then she started speaking less. Then she developed Celiac. Then tremors became blank stare seizures. Those became body drop seizures. She had to wear a helmet. A fucking helmet, people. A three year-old had to wear a helmet because they never knew if she was going to just fall down at any moment.
This August she stopped walking.
This September she stopped talking.
There is still no diagnosis.
Today, 18 months later Florence has undergone blood plasma transfusions and transplants and seizure management and hospitals and more hospitals and more helmets and all kinds of stuff that you should pray you never ever ever have to deal with in your life. Ever.
Today, 18 months later, Florence is recovering from a bone marrow transplant she underwent yesterday. It’s essentially the nuclear option. And it’s a $25,000 procedure.
Friends and family have been supporting them with donations through the Children’s Organ Transplant Association. While this is not something I am normally comfortable doing, screw my comfort. I am putting the link here in case even one benevolent stranger out there wants to do the same. But the other thing that I ask for? Good thoughts, wishes, prayers, and a teeny sliver of your heart–for a little girl who did absolutely nothing to deserve any of this.
Update 5/4: If anything could serve to remind me that people, overall, are good, it is you. The comments, the Tweets, the generosity of heart and spirit…it is quite simply, overwhelming. And beyond what I could have imagined.
Florence’s grandma emailed me this morning to say thank you. And now allow me to say it too. Thank you from the bottom of my heart. May it come back to you in a million ways.
If you want to keep up with Florence’s progress, you can follow the COTA blog here.