Athena & Robyn
Athena Conder is a beautiful 22 month-old precious girl who is scheduled for decompression brain surgery on Dec 2, 2016.
Her story begins with her mother, Robyn, seeking help for some very disturbing symptoms. Athena will hold her head in pain, shake her hands out, tremble, and have episodes that appear to be some sort of seizure.
The pediatrician Robyn was taking Athena to summed her symptom up to “behavior” even though it is evident in videos and photographs that Athena is suffering from pain.
Upon Robyn's insistence, Athena was admitted to a hospital to undergo in-patient EEG brain studies.
No seizure activity was recorded, however, Athena sustained chemical burns when nurses doused her in chemicals to remove the glue that held the wires to her little head.
After that hospital stay, the pediatrician and neurologist diagnosed Athena with epilepsy, despite no clinical proof, and put her on TOPAMAX, a anti-seizure medication with serious side effects. Athena did not tolerate it well and Robyn took her off of it.
Athena's pediatrician threatened to call the Department of Family and Child services and have Robyn reported for child neglect. When Robyn protested and said that she KNEW Athena's Chiari was causing the problems, the pediatrician yelled at her and called her a “second opinion mom”.
Finding us on Facebook, Robyn contacted the other mothers who are involved in this documentary and we all adamantly insisted that she did go get a second opinion.
Robyn found a surgeon out of state and took Athena there for testing last week. The results showed that Athena's brain is so squished inside her skull that she has zero room or cerebral spinal flow. It was determined that without surgery, she would not have made it through Christmas of this year.
We are all nervously waiting for her surgery in a few days, but we are very relieved that Robyn has a team of other moms who have gone through this to turn to and that she took our advice and found Athena this new team of doctors. Her surgeon sounds amazing. The team is aware of what we are doing in this documentary and support our efforts by allowing Robyn to film and record her experience.
Robyn's son Calif will also be featured in this documentary as he has been diagnosed with ACM and has struggles that no four-year old should ever have to deal with. We will fight viciously to ensure that both these kids have a different outcome than our angels.
Please say a prayer or blessing for our sweet baby and her family as she prepares to fight for her life.
"Athena underwent decompression surgery December 2, 2016 and so far, it seems to have been very successful.
Within 24 hours of her neurosurgeon creating adequate space for her brain to fit in her skull, her feet, which had been turned in, straightened out completely. All five toes are visible now. Athena was non-verbal and her former pediatrician labeled her as Autistic, but upon recovery, Athena started talking!
Her mom Robyn writes, “Athena was still on a bottle because she didn't eat much. Didn't like to swallow. Today she ate a whole omelet (sic), 2 pieces of French toast, a couple bags of goldfish and some sausage. She's walking with flat straight feet. She's talking like a 2 yr old should. She's eating everything she can get her hands on, and drinking from a cup.
DO NOT EVER EVER let the medical world go against your instincts. Do not let them convince you your nuts. They diagnosed her with autism prior to surgery.
She proved them wrong. They said Chiari wasn't her problem. She proved them wrong. Her new surgeon literally saved her life. No, she's not on the expert list. But to me, she is the most important expert we could have found.
We really needed a success story! We are so pleased that Athena is doing so well. It makes every hour of our work on this project worth it!!
We love you Athena! Good job, Little One!
We will be creating a fund under our foundation called, “Athena's Angels” so we can send advocates out to support parents as they go through these traumatic and very scary experiences.
Robyn was all alone with Athena during her surgery as her husband was home caring for Allison and Calif.
I personally know what that feels like as I endured Erik's horrible brain surgery alone as well.
To honor Robyn's courage, strength, and love for her daughter, we will fight so no other parent has to do it alone again." - Gia Soares