After a year and a half of testing revealed absolutely NOTHING, she was "clinically" diagnosed with Angelman syndrome. All of her symptoms seemed to fit that diagnosis. I joined every Angelman Group, began to spread awareness, raised funds, etc. Angelman syndrome is a seizure disorder and therefore, we were not surprised when Lyra started to display seizure-like activity! We were on to additional testing. An EEG showed NOTHING. Six months later another EEG:NOTHING. Her "spells" kept getting worse. Her eyes would roll to the back of her head, crossing, holding her breath, choking on her own saliva. We could not go on like this so we took her for a comparative MRI....THIS IS WHERE WE FOUND OUT THAT WE HAD BEEN IN IGNORANT BLISS!
Her brain had Global Atrophy. How could this be????? What did this mean??? The doctors explained to us that Lyra's brain had degenerated. They were not sure but it could have been a result of the regular seizures and other symptoms so our next step was a 48 hour EEG:.and yes NOTHING! Her 3rd EEG to reveal NOTHING!
Our next step was on to a geneticist, a brilliant woman who was an attending at Columbia University for 23 years! Our clinical diagnosis was thrown out, "ANGELS DON'T DEGENERATE". So here we are back at square one, the same place where we were over 2 years ago:starting over! There are tests that exist now, that didn't exist then when we started down this path. We have had the blood work drawn and await our results.
In the meantime, we need to acquire things to ensure her quality of life! Lyra needs Orthotics to get her up in her stander to learn how to bear weight. Until now, Lyra's orthotics had been denied by our insurance. UNBELIEVABLY, we just found out that they will approve this however, the timing is impeccable:right before the new year when our deductible will start from scratch!
Our out of pocket medical expenses are outrageous. In addition, to these expenses, she also needs a "SLEEP SAFER articulated bed" which has continuously been denied by insurance. Her legs get bruised no matter what measures we take, and I have to sleep in her room to position her over and over as she sleeps so she doesn't get stuck in the bars of her bed leaving her unable to get out. I have saved her life in the middle of the night countless times...because Lyra doesn't cry, she is unable to alert us when she gets wedged in SILENTLY! This bed is over $8000! It grows with her and would be the only bed she needs for life.
Right now, my little beauty can perch herself on her arms. She cannot crawl or scoot, but has developed a unique rolling maneuver. She cannot speak, does not cry, and eats pureed foods. She chokes a lot, and if this does not improve she will need a G-tube for feedings. We really work on her feedings to try and avoid this.
As a family we are trying to raise money for both the expenses of her insurance co-payments, as well as unapproved items that WILL improve Lyra's quality of life. We do not know what lies ahead for Lyra but we want every day to be her best day! If there is anything you can do to help us raise funds to assist us with Lyra's needs we would be extremely grateful. Alternatively, if you have anything you would like to donate towards a raffle, we plan on hosting a fundraising event and will utilize your donation in that way! We will do whatever it takes!
Lyra's story can be found on Facebook under "Team Lyra".
Thank you for taking the time to read our story!
- Efrain Acosta
- Bob Perry
- Rob Padva
- Tim Ucker
- Carl Hoffmann
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more