Calling on JJs Angels Whole-Exome Genetic Testing

Yesterday July 29th 2020 We were on a conference call with UCSF genetics department, because genetics is controversial there's not a lot of clinical testing being done let alone research testing, insurance doesn't cover tests or treatments there's a lot of red tape there agencies out there that could possibly help, there's a process it takes time, time we don't have, 19/2 years ago we tried to get genetic testing and it was cut off for stem cell research it was considered under that category JJ's very unique and needs these tests so we can hone in and cut to the chase of what's really going on we all know that our health Care system is broke, and elusive and tabu an uncharted especially in genetics so it's completely broken in this area and corrupt in my opinion, because it's not a money maker, these tests would provide answers and possible treatments JJ started regressing about 5 years ago falling over having seizures we didn't know why we still don't and trying to figure it out JJ's skull and atlas is fused together which his brain is seeping down until Hollw pocket the base of the skull this is a genetic disorder with a scoliosis and the deformations in his spine along in his brain, causing spinal fluid to build up in his brain, major headaches vertigo vestibular neurological issues spinning not being able to walk falling over eyes not working perpendicular slurred speech brain fog and just completely shutting down right before our eyes, also a ripple effect throughout his body missing his right radial bone in his right kidney he's also visually impaired cortical vision impairment CVI double vision nearsighted and farsighted and not being able to differentiate depth perception, yet my son keeps trucking on gracefully. JJ does not get the medical attention tests treatment referrals, and quality care as he should because he's considered under the criteria of genetics and will never progress... We are asking are family friends and community to pull together to get these tests in time so we don't skip the boat before the research is cancelled or the panels aren't taken off the market, time is of an essence, we also know that a lot of people at this time are having their own personal struggles with the pandemic going on, that's also another factor why the hospital agencies and fundings are short and not priority for genetics, besides the fact it's not covered under insurance. They want to do a whole-exome sequence test, to hone in on what's really going on we have already done some testing that was covered in the clinical basis that's taken years to get done and have validated some of JJ's symptoms of response to pain feeling hot and cold being able to articulate his feelings endocrinology system and how the messages to the brain are being Miss fired or transferred through the small fiber nerve channels to his brain. Genetic testing and also treatment could not only help him but also do preventive care, also by doing this test if his father and I come up with some of these genes it opps us out of life insurance policies and future medical coverage we are completely aware this and it's not an issue we want to live in the now and have quality life for now for JJ. Unfortunately this is such a area that is not regulated and very controversial on so many levels. People like my son suffer because it's not priority or routine or given the funding and credit and science that it needs to do to help people like my son and others that could also potentially cure other deteriorating diseases and illnesses and disabilities. https://m.facebook.com/story.php?story_fbid=3232383006881556&id=100003296652601 we believe in power of prayer and strength in numbers and we ask that at the least share this post and keep us in your thoughts and prayers thank you JJs Angels