Support Riley's Journey Through Medical Challenges

My names Lexi and my boyfriend name is Josh, my son’s name is Riley who is now 10 months old and we have 2 little girls named Sophia and Raven who are 4 and 3. We really didn’t want to do this but at this time we have no choice. Riley was born with hypertonia, clubbed foot, and micrognathia. We were correcting the clubbed foot and hoping he would out grow the hypertonia and would eat better. Riley continued to struggle to eat and had hit failure to thrive 3 separate times with admissions. His first swallow study only showed aspiration on level 2 nipples so we continued to feed him by mouth. As he got older he was visibly choking more and more, turning blue. We did all the routine genetic testing, neurology, follow ups, MRIs. Riley started to become delayed at 5 months old. He wouldn’t eye track, never looked us in the face, didn’t coo, wouldn’t play. He stopped holding his head up all together, his body was very limp. Then it was determined by brain MRI at 6 months old riley has an optic pathway glioma embedded into his left optic nerve, chaism, and tract. So due to placement it will remain inoperable for the rest of his life and the only treatment currently will be chemotherapy. We had to see ophthalmology and they sent us to the Perlman center who then diagnosed Riley with CVI which is cerebral visual impairment. Riley doesn’t understand what he can see. As well as having hemianopia, no right field vision in either eyes, and astigmatisms in the remaining vision. Riley continues to show delays. Riley has continued to aspirate while all of these other things were going on, continuously working with speech therapies, his pediatrician, OT, PT. At 7 months old we finally had another swallow study and it was deemed unsafe for Riley to eat by mouth any longer. These results showed him aspirating on thins, mild thick, thick, and purees. Riley then has a NG feeding tube placed. Within a month Riley had gained 6 pounds. Beat failure to thrive, he really seemed so much healthier and happier. While inpatient for him NG tube we started to have concern for seizures. We had genetic come in again for more testing. The testing is so new we had to wait for approval. At 8 months old Riley was tested again and it had shown a genetic mutation on his MED-12 gene that came from his X-chromosome. It is a rare genetic mutation that unfortunately will cause life long disabilities related to diagnosis like opitz kaveggia syndrome and ohdo syndrome. We are now waiting till September to find out if it’s malignant or benign. If this is the root to all of our problems or not. We’ve had 3 EEGs and each one did not show active seizures but did show epileptic waves that could eventually be seizures. Riley is now 10 months old, diagnosed globally delayed, optic pathway glioma, cvi, hemianopia, low vision, feeding difficulties with severe reflux and hypotonia. Riley still has a complete head lag, does not sit up, crawl, does not baby babble. We are now trying to get a diagnosis for cerebral palsy without positive MRI but this may take some time his neurologist said. We follow up every 2 months with neuro-oncology, neurology and neuro-ophthalmology to make sure his tumor has not grown because if it does in the slightest they are going to start him on chemotherapy, make sure he hasn’t lost anymore vision and the seizures haven’t become on-set. We see PT, OT, speech, help me grow, association for the blind and visually impaired weekly/biweekly. Riley is now being admitted for a triple scope with pulmonary, ENT, and GI. And they are going to put in a G feeding tube at the same time on Monday. Unfortunately josh, Riley’s father, is our only source of income. I am unable to work due to no childcare for Riley since he can’t be left with anyone not medically trained. Josh has recently lost his job due to running 15 minutes late because we had to re-insert Riley NG tube when he ripped it out in his sleep. Josh starts another job at the end of the month but we can’t make ends meet. All of our bills have become due and we have no way of paying for them. Riley needs to make it to all of his appointments because it’s crucial for his development at this point and that takes gas and maintaining our car. Diapers, wipes, you name it we need it. Unfortunately it will take a few months for social security to be able to help us, Riley has to actively be on chemo for children’s to be able to help. So If you can help in any type of way it will be very appreciated. Thank you and god bless.❤️