Please read the following from Wednesdays Mommy Abigail
"As you all know, Wednesday has been admitted since her birth at only 24 weeks gestation, 13 months ago. Most kids that are born so premature, can usually outgrow their chronic lung disease/bronchopulmonary dysplasia, and make their way home. “With time,” she should have gotten better. She has, but not to the extent everyone has been hoping for.
Back at the end of November, we had a family meeting here at Golisano Children’s Hospital, where they told us Wednesday has a very rare genetic condition. Filamin A deficiency or FLNA. There are only a handful of case studies on it, majority of them coming from a pulmonologist at Texas Children’s Hospital. With this diagnosis comes a few things. We’ve finally received our answer as to why she is still having so many problems this far down the road. On top of having extremely underdeveloped and premature lungs, this condition prohibits normal growth and structure of the lungs. During this family meeting, it was in everyone’s professional opinion that Wednesday will not get better with time. That she will most likely spend the rest of her life in a hospital, on a ventilator. Our hope of bringing her home seemed so far away. She currently has end stage lung disease, is extremely complex, and is battling so many things all at once.
It’s truly a miracle she is still alive and has been fighting against so many failing parts of her body to be here with us. With this, we were asked if we wanted to consider more palliative care, more comfort rather than treatment. An impossible decision to make as her parents when she’s come this far and has fought so hard. We both sat there, looking at each other, holding back tears, and told them no. She wasn’t ready. We weren’t ready. We didn’t know if it made us selfish, in denial, naïve, but I just know that if my baby was ready to leave us, she would let us know.
With all of this, the team here at Golisano asked us what they could do to help us through this. I asked them to see if they could somewhere or someone that knew of this and had a treatment. A few days later, they told me about Texas Children’s Hospital. A pulmonologist has published case studies on about 7 kids with the same genetic condition, all diagnosed around the same age. The only “cure”?
A double lung transplant.
A complete shock for us. You spend so long sitting, waiting, hoping, and to now know the only thing that will help her is something so risky. The survival rate after 5 years is only 50%. Alex and I spent a long time discussing this, but automatically knew this is what we would pursue for her. Even if it meant she could potentially only live for 5 years post transplant, it’s still 5 years HOME.
So, this upcoming Tuesday, Wednesday and Alex will get on a med flight and make the trip down to Texas, where she’ll be admitted and finish up the evaluation process to be listed for transplant. Tomorrow, I pack up all I can and get on the road to make the 23 hour trip to Houston.
I’m so excited for her and so scared at the same time. We know we’ve done all we can. This is the last thing there is left to do and then hopefully within the next year, my baby will be home with us. FINALLY home.
New lungs means the loss and death of one for the gift and life of another. Another family out there, selfless enough to go through with organ donation. We are forever grateful for the parents strong enough to make that decision while losing their child. And are hopeful Wednesday has the opportunity to let another child’s lungs flourish in her body."
- Michael Rockoff
- Roberta J Chester
- Sarah Venuti
Organizer and beneficiary
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