Jaylen Ezekiel Briseno

Hello Family and Friends,

I am starting this Fundraiser on behalf of my Son Jaylen Ezekiel Briseno. Since birth Jaylen has always struggled with gaining weight and growing, the doctors Call this, “Failure to Thrive.”We were constantly changing his Formula, until we have finally found one that has helped him gain weight and grow like a normal 2yr old toddler. Yet as a parent, something just still didn’t seem normal with Jaylen, so beginning of 2022, we started to aggressively pursue a diagnosis through varies specialist, including the following; neurologist Specialist, genetics Specialist, pediatric Gastroenterologist, Endocrinologist Specialist. And so far we have gathered, a couple of diagnoses, the first is “Glycogen storage Disease, which is a reverse Diabetes, his sugars levels get to low we have to get it up rapidly, (soda, candy, cookies) this requires him to have a Dexcom Glucose monitor that is attached to either of his arm, 365 days a year. The second and the more serious diagnosis is “Megdel Syndrome.” Megdel is a Genetic disorder that’s caused by a mutated Gene. In infancy, individuals with MEGDEL syndrome develop hearing loss caused by changes in the inner ear(sensorineural deafness); the hearing problems gradually worseover time. Another feature of MEGDEL syndrome is brain dysfunction (encephalopathy). In infancy, encephalopathy leads to difficulty feeding, an inability to grow and gain weight at the expected rate (failure to thrive), and weak muscle tone (hypotonia). Infants with MEGDEL syndrome later develop involuntary muscle tensing (dystonia) and muscle stiffness (spasticity), which worsen over time. Because of these brain and muscle problems, affected babies have delayed development of mental and movement abilities (psychomotor delay), or they may lose skills they already developed. Individuals with MEGDEL syndrome have intellectual disability and never learn to speak. Jaylen is 2 and only says “mom” and “Dada.” Many weeks will pass and Jaylen will be a normal toddler in his “Terrible Twos,” but there will come a week where he just refuses to eat solid foods and worse his Main source of nutrients his Milk (Kate Farms). as of May 31st 2022, Jaylen has not had an appetite for any solid foods and refuses his bottle. On Friday June 3rd we took him to Memorial Medical, to see if they could help rehydrate him and get him Feeling better, but the drs wanted him at University Of New Mexico Children’s Hospital In Albuquerque,NM, where as of June 5 is still admitted. We’re awaiting a group of specialists to see him Monday June 6th to help get Jaylen back to his “Normal” self. I am blessed with amazing Employment, with great health benefits, but nether less the Amounts that insurance doesn’t cover is starting to Pill up. He had 2 MRIs that were in excess of 20k each, with our responsibility being $1200 each, I am anticipating the bill for the helicopter transportation from Friday June 3rd from Las Cruces to Albuquerque to be quite expensive. We are also getting lessons for sign language that way we can communicate with Jaylen if he indeed never speaks. It’s so hard and depressing to have a ill child, the feeling of helpless is the worst feeling imaginable as a parent. Katherine and I are asking for financial help from friends and family as we are traveling back and forth from Las Cruces to Albuquerque and for the medical bills that are arriving. Any donation is greatly appreciated, and if that’s not possible I would definitely ask you all to keep Jaylen in your prayers, and Katherine and I as well, we need the strength to hold our selves upright for Jaylen and our other children. Thank you all for your time in reading this fundraiser. God Bless us All..

Johnny “Jay” Briseno