Enriching the lives of Texas' children who are medically fragile and 
terminally ill.

Hope's Seeds Miracle Model

Nash Cheesborough

Nash warms everyones heart


  

To save our son's life, Doctors rushed to take him via emergency C-section at 31 weeks, resuscitate him and put him on intense life support in the NICU. Our sweet boy, Nash was born with a rare condition called congenital chylothorax which caused him to reside in 3 different hospitals for most of his first year of life. He was also born with several heart defects, severe respiratory distress due to pleural effusion, several congenital eye conditions, microcephaly, GI issues, and seizures and was listed as failure to thrive, plus more. He had multiple chest tubes to drain the chyle fluid from his lungs, transfusions, intubation for more than a month, Central PIC line and Total Parenteral Nutrition. His chylothorax condition was managed with experimental medications and treatments. At 3 months, he received a tracheostomy and G-button to be able to feed him through a tube inserted directly into his stomach. He also required a ventilator 24/7 to help him breathe. He turned blue so often, the nurses in the hospital were scared he would die on their shift. We never knew it would be possible to bring our son home and safely maintain his medical needs until we received help through a Medicaid waiver program that provided in-home skilled nursing care and life-saving equipment that insurance refused to pay. Having him home with us enabled him to grow stronger and remain healthier without as much fear of infection from hospitalization or being institutionalized. With the wonderful care of our nurses and therapists, his condition gradually improved. At 4 years old, he took his first steps. At 5 years old, his trach was removed and he began to say, Elmo and Momma. At 6 years old he started to take pureed food by mouth and went through an intensive feeding program several times. It wasn't until he was 8 years old, did we receive confirmation that he had a very rare disease called Cardio Facio-cutaneous Syndrome and was only 1 in approx. 450 people in the world diagnosed with this condition. This diagnosis gave us a home to turn to and explained his short stature and super curly hair! Now, at 10 years old, he continues to have respiratory and feeding issues, the threat of seizures and another tracheostomy. He is intellectually impaired, globally delayed with permanent vision impairment despite 6 eye surgeries. His little body has to work twice as hard just to do simple, daily tasks. Always with a smile on his face and his buddy Elmo in his arms, Nash warms everyone's hearts when they meet him. His "double dose of ADHD" as one of his specialists describes it, keeps him (and us) busy throughout the day. He's taught us so much about the importance of loving the life we have, accepting who we are and relishing those special moments we have each day. We are so happy that he's progressed so far and love how he enriches our lives.

  
You're Not Alone