Legacy

Autism spectrum disorder, ZMIZ1 Syndrome,  ventricular septal defect( heart condition), failure to thrive, microcephaly, hypotonia, scoliosis to name a few are the diagnoses Legacy has been diagnosed with in over the last 3 months. I’m working a second job in the evenings to cover his food costs as he is 18 months old and still only eating puréed foods. He is still drinking by doctors orders 32oz of fortified formula. Every. Single. Day. Not covered by WIC. Thats what a 6 month old drinks and he’s almost 19 months. We are being sent to Denver Children’s Hospital to be seen by genetics to get a clear understanding of his syndrome most likely syndromes. This kiddo fights every damn day to be here and I’m right there with him. The trip to Denver alone will cost roughly $2,500 with travel, lodging, food etc. the testing for Autism Spectrum Disorder here in the state of New Mexico is around a 2yr. Wait. Because of this and the need for services is so crucial we will either be traveling to Texas or Colorado again for this testing as well. Legacy has a team of over 5 developmental therapist whom he works with each week, he is starting feeding therapy to encourage solids. Legacy is currently taking a daily dose of medication to try and slow the pressure in which his heart is pumping blood because it is enlarged the left side of his heart and he is at risk for needing heart surgery I. The coming months. He visits  cardiology in two weeks for a repeat ultrasound of his heart. His 5th one. As a single parent this has been and continues to be extremely exhausting and incredibly expensive. I wouldn’t ask if there was not a need. Legacy deserves these treatments and access to therapies not covered by insurance. I stray from trying to make this sound doom and gloom. It’s not. I’m working tirelessly to keep up with the costs to cover these treatments. Folks are asking how they can help. Here is how. Please share if you can not contribute. It takes a village and this kiddo is calling.