3p Deletion Syndrome

When my youngest was an infant, he was diagnosed with 3p.25 Deletion Syndrome. It is very rare, and took many months to diagnose. After he was born, his health declined continually. He was near death for months, and doctors had no answers. After stays at Primary Children's Medical Center, hundreds of tests, treatments, and procedures, a geneticist found the answer. We have never met or talked with a patient or doctor who has treated a patient with 3p deletion syndrome. We have read a little on the internet about a few children who have it. After a NJ tube and later G-tube placement and oxygen 24-7 for over a year, he has improved very much. He is almost 4 now, and took his first steps last month. We are so excited for him. He has spent countless hours with many physical therapist to get this achievement. He also works with a speech therapist (he still doesn't talk), occupational therapist, vision therapist (he has CVI- cortical visual impairment) and other special needs children specialists.   We have worked very hard to train his esophagus to swallow without aspirating. He gets water and some nutrients through his G-tube, but will now eat soft foods from a spoon. He has many food aversions, so we are continually working on textures and some day he will eat firm solid foods and maybe even pick up a cheerio and eat it!  He is still small, wearing 24 month clothes. He gets to ride the bus to his school and walks around with his little granny walker. It's quite adorable. We love him!