Lyla, 8 months old is fighting multiple health conditions including Chiari malformation ( which is a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. Chiari malformation is uncommon, but increased use of imaging tests has led to more frequent diagnoses.) which will require her to undergo brain surgery. The family needs to raise money for treatment by end of July. Lyla is truly a miracle baby as she also has to overcome Epilepsy, Apnea, Cerebral Palsy and Sandifer Syndrome (Sandifer syndrome a rare disorder that usually affects children up to the ages of 18 to 24 months. It causes unusual movements in a child’s neck and back that sometimes make it look like they’re having a seizure.)
Tax-deductible donations may be made with the Armer Foundation for kids or the family also has a GoFundMe page: https://gf.me/u/yc6hid
Lyla’s mom Krystal said “ My husband and I moved here with my family about 2 years ago so we have a small support system here right now, but we have my mom, dad, sister and Lalonna to help with Lyla. II’m not working. I had to leave work too many times because she would turn blue and needed to go to ER. I’ve been off since March and her dad Mason and I are doing everything we can to make sure she gets what she needs.
There are therapies we can do, but they will not be covered by insurance because they are not considered a medical necessity.
Lyla is a twin and since birth struggled with eating! About two months old she kept turning blue on us and not responding! We had to do CPR a few times. It kept happening with no real answer as to why? They believe she has Chiari malformation We later got involved with GI because Lyla was losing weight rapidly and no one had an explanation. Lyla was born 5 pounds and was down to 4 when we were finally admitted. She had a NG tube placed for 2 months before they decided she needed a g-tube because she had oral inversion and is unable to eat at all. Lyla also has a muscle disorder, sandifer syndrome, epilepsy, and still turns blue about 1-3 times a week. She is on oxygen to help regulate because she able to do it independently. I really like to call her my miracle baby!”
July 28th. and update from Lyla's Mom:
My heart broke a little today. I had to make the final call and decided that I won’t be able to return to work full time as Lyla needs me home to care for her. There are still so many unknowns that we need to figure out.
Long story short, Lyla is a mystery. Straight up, no one really has a solid grasp on what is going on, but we think that is just the year of 2020 at this point!
Lyla has chiari malformation of the brain and it needs our attention. Mason and I have to chose what we think is best for our little girl. Therapy or surgery? It’s hard, it’s not a bone or something being fixed. It’s her brain 🧠 it’s a lot of thought and long research we are doing to make sure we do what’s best for her. No pressure, right? 😉
Lyla had 5 MRI’s done today. 3 of her spine and 2 of her brain! We don’t have results yet, they said they will call tomorrow and talk about “our next steps.” We don’t know if that is bad or good, but what we do know is, is Lyla was able to come home and be with her brothers and family. We are so grateful for that 💖
Today we just let her rest and be peaceful. Tomorrow is a new day and we will update everyone when we know what is going on.
~ Lyla, we love you beyond words and you have an amazing community/team of people standing behind you.