After a trip to Children's Hospital LA, it was discovered that she has unilateral Persistent Fetal Vasculature (PFV). In lamens term, her right eye did not develop fully while in the womb and she currently cannot see out of her right eye. If we delay treatment, there is a good possibility that she would go blind because her eye and her brain are not communicating right now since she cannot see, and the longer we wait, the more likely it is that the brain-eye connection will never be made.
Treatment for her will include surgery to remove a cataract-like mass in her eye and clean up some of the blood vessels that did not retract when she was in the womb. After the surgery, she will require additional eye therapy, several follow up visits to ensure treatment is working, and she will require a contact lens to protect her eye until she is old enough to have a permanent lens put in. (Yes - babies can wear contact lenses... that is so wild to us! And even more wild/nerve wracking that we will have to learn how to put a contact lens in and take it out of her eye on a daily basis-- yikes!)
While Cora is covered under Kristin's insurance until 10/31, the surgery is still extremely expensive for us with coinsurance. More importantly than the actual cost of the surgery, is the need for us to keep Cora on Kristin's insurance after we move back to Wisconsin. Since we are moving, Kristin's insurance ends on October 31 and her new insurance from the new job doesn't start until January 1. Our original plan was to get coverage in the exchange or another provider in the interim for the 2 months we will be without coverage. However, the coverage that is within an affordable price range are high deductible plans that have either waiting periods or don't cover the special care and treatment that Cora will need. Our only option to ensure her wellbeing, health and safety is to keep her current insurance through Kristin's current employer under COBRA. However, the insurance premium to do this is $1,400 per month.
In addition to the cost of the surgery and the cost to keep the insurance coverage that we have now, we will also have a number of follow up appointments after we transfer care when we are back in WI.
We are humbled to ask for help and it truly is not what we want to do, but at this point, we are out of options to be able to give her the best possible care for her condition. We are nervous about the treatment, but are confident with the AMAZING team at Children's Hospital LA and their efforts to transfer care for us when we move. Add a cross country move to the mix in the midst of her treatment and you have two very anxious, nervous parents - just have to keep the faith that everything will work out fine. Prayers and good vibes are appreciated :)
If you are able and willing to help us out a bit with a donation, we are forever grateful. We hate asking for help like this, but don't have any options left and we need to ensure Cora has the best care possible so she can have the best outcome possible.
Thank you so much- prayers, vibes and donations. We are truly humbled and SO appreciative.
- Thomas Ender
- Dionysia Makri
- Kevin Wing
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