Jace’s Face please help

Hello everyone. As you all know Jace was diagnosed with Parry Romberg Syndrome (Hemifacial Atrophy) and Linear Scleroderma in February 2019. Recently he was diagnosed with Morphea as well. This will be something that affects him for the rest of his life. He can still loose his vision, hearing and can have seizures along with nerve pain in the face. He will need numerous surgeries and procedures. He will have to see Craniofacial specialist, Oral Maxillofacial specialist, Neurosureons, Neurologist, Rheumatologist, Dermatologist and I don’t know how many other doctors in the future. He will have to have frequent MRI’s, Labs, CT scans and procedures including fat transfers to fill the hollowness in his face to try and give him a normal appearance. Depression is common as well because he will have to stay like this till he’s around 18 years old and stops growing. Now a days with bullying I can only imagine the emotional stress that all of this will cause. We do have private insurance but between the deductibles, speech therapy 2 times a week that he will soon be starting, copays, travel expenses to take him to his specialist in Austin and Dallas, medications, lab work and everything the insurance doesn’t cover or they deny because they don’t feel like he needs these things. This Syndrome only affects 1 in 250,000 people. There is little to no research for it and they still don’t know exactly what causes it.  We did try applying for Medicaid and were denied. With everything going on and running around between appointments and making sure all of our children are taken care of. I am unable to work without it affecting my health because I would have to work overnights and would basically be going on little to no sleep. Thank you everyone for taking the time to read this. We truly appreciate any kind of donation or please share so other people can learn about this Syndrome. If you would like to follow his journey please feel free to follow: Jace’s Face Living With Parry Romberg Syndrome on Facebook. I am also attaching websites if you would like to learn more:

https://rarediseases.info.nih.gov/diseases/10485 morphea#diseaseOverviewSection

https://www.ninds.nih.gov/disorders/all-disorders/parry-romberg-information-page

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3272788/