Asher Strong Medical/Funeral Fund
of $35,000 goal
Raised by 32 people in 25 months
Asher RaeAnn Gayed was born December 30th, 2016 at 6lb 6 oz and 19.5". She was admitted to the NICU with breathing problems immediately after birth. Asher spent 40 days in the NICU and was diagnosed with agenesis of the corpus colosseum and Polymicrogyria (PMG). She was sent home on continous oxygen to continue to help her breathing and a monitor that tracked her heart rate and breathing.
After being home for 31 days Asher was admitted to Childrens' Hospital in Omaha on March 11, 2017 because her breathing looked strenuous and she wasn't gaining weight or keeping her food down. After some tests they had immediately found she was having issues with her heart and after various echos, x-rays, and a cardio catherization they found she had dilated cardiomyopathy/heart failure and severe pulmonary vein stenosis in her upper left and right pulmonary veins. She was also diagnosed with failure to thrive, acute respritory failure,cortical displasia, more severe bilateral polymicrogyria, absence of the corpus callosum, slightly dialated cerebral ventricles, severe protein malnutrition, tachypnea, retrognathia, and hypertension.
In the long run Asher would need a heart a lung transplant to fix the heart failure. We got opinions from Omaha Childrens hospital and Bostons Childrens to see what they thought about the transplant. Before they are able to successfully do the hear/lung transplant she has to get her pulmonary veins fixed but another heart catherization with a "balloon" on the end that would be pushed through her veins to then open up the closing pulmonary veins. This is a high risk procedure for how sick Asher is and is also a procedure that would potentially need to be done multiple times if the stenosis keeps coming back. If this procedure is sucessful there would be a long shot of going to Boston for the heart transplant.
Overall, on top of the multple surgeries and procedures Asher has been closely followed by genetics doctors to try and find out what her syndrome or condition may be. These tests are very exspensive and 10+ have already been ran and all the test results have came back normal. The Exom Sequence test that would give Asher the best chance of getting an answer was denied by insurance and we continue to work our way around this set back in hopes of finding out what is wrong with our baby girl.
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*After Asher's second heart cath the doctors founds that Asher's condition had progressed severely and was worse then they thought. The narrowing had moved to include both bottom veins and completely closed the left side veins and and was in multiple spots on all 4 veins. There was nothing left that the doctors could do. We didn't want to prolong Asher's suffering so we withdrew support for our little girl. She fought till her last breath at 1:40 am April 23, 2017. She passed away cuddled in bed with mom and dad.
Mommy and Daddy love you so much. You'll forever be our miracle!
Here you will find daily updates, successes and news about our strong little girl and her journey that is just beginning. We thank you for your thoughts, prayers and support.
Checks can also be made out to Asher Gayed and sent to the family or dropped off at any WestGate Bank location to Asher Gayed's account.