Fundraiser for baby Ethan
He spent a week in Phoenix Children's Hospital and was diagnosed with seizures. He would have them as often as every 20 minutes, lasting 30 seconds to 3 minutes each. They also determines with the EEG monitor that his brain has very disorganized brain wave activity, even when he is not having a seizure. They ruled out many of the possible causes, all test results kept coming back normal and healthy, but the seizures persisted. They got him on 2 prescrition medications and had also given him a stronger "rescue" medication to stop his seizures. He then went 3 days witout a seizure and he was discharged from the hospital to go home.
Then next day after being home his seizures started back up. We called his neurologist and got advice over the phone to up the dose of one of his medications, we gave it a few days to take effect, but his seizures continued. We called again and were given advise over the phone to up the dose of the other medication and give it a chance to take effect, but if it didn't we were to come back to the hospital.
His seizures continued and so my husband and I are currently staying at Phoenix Children's Hospital with Ethan. Ethan has two older brothers Logan, 6 years old, and Jaden, 2 1/2 years old. They love their baby brother sooo much. They are currently having to stay with their grand parents 3 1/2 hours away from us, their parents and baby brother. My husband has to miss work when he is here at the hospital. I am also taking a longer maternity leave than expected, away from my job as a self employed hair stylist and salon owner. It is a new salon and I am barely able to break even with it at this point. Our hospital bills, travelling expenses, etc are quite high and we are struggling to make ends meet, as well as not knowing how we will have money for our oldest son's birthday coming up or with christams coming up. While we have to stress some about finances right now, we have been extremely fortunate to have so much support and help from family and friends with caring for our other two boys, caring for our dogs, helping us watch Ethan when he was at home and had to be watched 24/7 even through the night! And of course all of the sweet well-wishes and continued prayers from everyone! We are so blessed to have such amazing family and friends!!
We are still awaiting results from more genetic testing and at this point do not know what the future holds for us, other than that Ethan has some form of severe drug-resistant Epilepsy. He is such a sweet baby boy and we thank God for our little blessing. In spite of this all he brings so much joy to our lives!!
Even the smallest donation will help us. We appreciate it SO much!! And hope to be in the position to pay it forward or back in the future should we be in the position to be able to help those who need assistance from us!!
Thank you SO much!!!
Baby Ethan's Parents
Cierra and Michael Weaver
Since the last update we found out Ethan's diagnosis which is a very severe and rare form of genetic Epilepsy called "Malignant Migrating Partial Seizures Of Infancy". The literature says there are only 100 documented cases ever. It, also said that of those 100 cases, 50% of the babies passed away before 1 year of age. It also states that so far no effective treatments have been found. This form of Epilepsy is extremely medication resistant and some anti-seizure meds even make their seizures worse, as we have seen happen to Ethan. It seems the only way to keep these kids from having 100s of seizures a day is to keep them in a somewhat sedated state, and even then, most of the kids still have daily seizures, and of course because of the sedation are left in a totally debilitated and dependent state. It also said the 50% that did not pass away in infancy, still did not survive long into childhood.
While this diagnosis was hard for my husband and I to swallow, further research led me to a support group on Facebook for parents of children with this diagnosis. There are aprox 170+ members from all over the world. And the outcome for each child has been quite different from child to child. (Sadly there are some parents on there who have already had their babies or children pass away from this horrible, relentless, aggressive Epilepsy. :-( )The children that seem to be doing the best are the ones on different forms of cannabis medications, some through their doctors as part of studies, and some on their own. There are no doctors close to us that are doing the study. And since of the medications Ethan's doctors have been able to try, none have worked for him to control his seizures (except on occasion when they rendered him in a sedated state) we are basing our treatment for Ethan on cannabis. Unfortunately insurances DO NOT cover this medication and it is VERY expensive!!
We have only recently started Ethan on these treatments (THANKS TO ALL THE DONATIONS THAT HAVE ALREADY COME IN FOR HIM!!!) and are still figuring out his perfect dosage, but we have at times gotten moments of miracles after dosing him with the cannabis, where Ethan is not having seizures and is happy and active. Sadly these moments have been far too rare, and he still is usually seizing or sleeping, but we have faith that the longer he is on these treatments and the more we figure out a perfect dosaging for him, the more of these seizure-free moments we will have until hopefully it will be his effective long term treatment. We have seen several kids with this same diagnosis and similar diagnosis become seizure FREE on cannabis treatments, so this is where we are basing most of our hope right now.
We also have been doing tons of research on different dietary supplements to help support his healing, and all of these are expensive as well and not covered by insurance.
Having these treatments that he needs (and that we have SEEN work for him!!!) Could mean the difference between life and death for baby Ethan. Your donations are so extremely appreciated, we cannot thank you donors enough. And we understand not everyone can donate, and if that is the case, please share this page for baby Ethan!!!
Thank you from the bottom of our hearts!! <3
Baby Ethan's Parents
Cierra and Michael Weaver
Ethan is still struggling with seizures and in fact has started having a different additional type of seizure that makes me think I may know what syndrome he has. I will hopefully be able to speak to his neurologist on the phone today, and I will keep you all updated as we work towards finding a diagnosis!
All of your love and support and prayers has been enormously helpful in giving us the strength to get through this tough, stressful, scary, exhausting, depressing and difficult time!
WE LOVE YOU ALL SO MUCH!!
Baby Ethan's Parents
Michael and Cierra Weaver
I am praying for Ethan and your strenght. I will share your post and praying for a miracle.
Im sorry i cant financially help you at this time but i will for sure keep you and your family and friends in my prayers.. god is good ;) just have faith ;) god bless you all