Help the parents of Leila Luce with medical bills.
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Update written by Jen late night 2/6/2022
Thank you so so much for the prayers!! Please don’t stop! Leila is continuing to have seizures even on massive doses of anti seizure meds and adavan… she has now had 7 seizures all which she stopped breathing… the last of which we had to be pulled out of the room so they could get her stable . We are in the icu at Mott Childrens hospital now. They are starting Leila on a new medication to prevent seizures praying this will help her.
Update written by Jeff 2/6/2022
For anyone who has reached out that we have not responded to yet.. just wanted to apologize as it has been a long stressful day. Please feel free to continue reaching out especially once we get home when that time comes. It’s hard to respond now with everything going..
Update: Things aren’t going too well with Leila. She’s continuing to have seizures and medications are preventing or stopping them like they should and she stops breathing when she seizes. We just got her hooked up to an EEG to monitor any seizure activity in the brain. We are begging and pleading with neurology to change her medication that better treats the gene mutation that we suspect she has. They are looking to test her for meningitis by lumbar puncture. Jen and I don’t think meningitis fits any of her history but they want to rule it out. However due to her active seizures they can’t do a puncture and want to get her antibiotic to treat for meningitis anyway. They are looking to do more testing and are considering a new class of medication although it isn’t the one we are requesting as we would like her to be on the medication that helped treat a family member when she was battling seizures at a young age as well. If Leila has this gene mutation that runs in my family then she needs the certain medication that helps combat that. It’s been such a long hard day and the past weeks have been very traumatic.
Update on Leila: written by Jen 2/6/2022
*PLEASE DONT STOP PRAYING!
While at Hurley ER Leila’s oxygen started dropping so they were going to put her on oxygen but she began having another seizure. She had another seizure shortly after this. She was witnessed by the peds dr and she even said she was turning blue . Her poor little body is going through so much right now and it just breaks my heart to see it. . She had 2 back to back seizures while on a double dose of anti seizure medication.
They are airlifting her to Mott Childrens hospital in about 15 min. They said she needs to be airlifted because she is a lot sicker. She will need to have a continuing EEG on which Hurley can’t provide. This will monitor her and if she has a seizure it will pick it up and give them more information as to what is going on. Pray they can get her medical records quickly so they can begin treating her in the best way possible.
Please petition to God for my baby. We need all the prayers we can get right now. Jeff and i are exhausted and so scared. This is all out of our control but we know that God is in control and that he is good and that he loves Leila far more than we ever could. Also pray for the doctors for wisdom on what is the best medication for Leila as I believe the keppra is not sufficient. Also that jeff and I would be given a plan of action to be better prepared this event should ever happen again at home.
This is my granddaughter Leila. She had a seizure and stopped breathing. Her parents found her turning blue and not breathing. Her mom called 911 and my son did cpr . They were able to get her breathing again and took her to Hurley hospital. Within an hour of being at the hospital she had another seizure. The hospital did an MRI that showed areas of critical bleeding in her brain. She was air lifted to Childrens hospital in Detroit. She’s been in the hospitals for three days.
They have done a 24 hour EEG that came back good . We have learned that there is a genetic mutation in our family . My niece has a daughter that was diagnosed with epilepsy. We were not aware of this. We did not know that it could be all linked together with the seizures my son had and also my niece had when they were babies.
This has been very scary and stressful. I don’t want Leila’s parents to have any more stress added on when those medical bills start coming. They do have insurance however it does not cover everything. There will be deductibles and copays that will not be covered. Most importantly, parents did not have any say in how the baby was transported from one hospital to the other. Insurance does not want to cover the airlift because medically her vitals were okay at the time due to being on medication. However the hospital would not transport by ambulance and gave the parents no choice. Airlift can cost tens of thousands and insurance doesn’t not want to cover it.
Leila is also going to need another MRI in a month and many other tests. She will stay on the seizure medication and hopefully that continues to work.
I have had several people reach out asking me how they can help. So I’m creating this for anyone that wants to help.
If you would like to take some of the worry away so they can keep their focus on Leila . Please donate.
Organizer and beneficiary
Candy Luce
Organizer
Swartz Creek, MI
Jeffrey Luce
Beneficiary