With Joey's Needs and Medical Expenses

Hi, My name is Joey! I was born May 31st, 2022 at 35 weeks. I went straight to the NICU to where I spent the 1st 6 and a half months of my life. During this time I was diagnosed with meningitis 2 times, Moebius Syndrome which only 1 and 500,000 births happen and I cannot eat anything by mouth so I am g-tube dependent, trachea malasia to where my trachea collapses when I bear down or try to cry which has caused me to have to have a trach and be on ventilator with oxygen, a gene mutation in the PTPRT gene which only 4 other people in the world besides me has this diagnosed with this mutation so there is still investigations going on with the mutation, I was diagnosed with moderate to severe hearing loss in my left ear, and was also diagnosed with a seizure disorder which with my trachea malasia caused me to have blue spells to where my oxygen would fall and I would turn blue. I am required to have someone with me 24 hours a day to where I have to have a day nurse and a night nurse that helps take care of me because I can get a plug and if it isn't fixed then I could die. Sometimes they call off and my mommy and daddy have to split the night shift so that they both can at least get a little sleep to make sure that I am protected.

Since coming home from the NICU, I have been diagnosed with Delayed visual maturation, Myopic astigmatism in both eyes, convergence spasm (eyes), ametropic amblyopia, bilateral (eyes), cortical visual impairment, Chronic respiratory failure, acute hypoxic respiratory failure, endocrine issues that I am still being tested for, I have just been diagnosed with myopathy of my muscles that they believe is from my gene mutation but because they don't have enough information on it I am going to have to be entered into a study at Harvard Medical Center, but they do know that they believe I will be wheelchair bound for the rest of my life, that I will not be able to sit up, or walk and I will need to see all my doctors that I already see which is neurology, neuromuscular, genetics, complexcare, endocrinology, immunology ENT, Surgery, Ophthalmology, and will have to add on at least cardiology as well along with weekly physical therapy sessions to ensure that the myopathy does not get worse. I also get occupational therapy, Developmental Therapy, Developmental Therapy Vision, and Developmental Therapy hearing. Eventually they will add on speech as well, and will be looking into a communication board so that I can attempt to communicate my needs and wants. One other thing they believe I have is an immune disorder to where I get sick a lot especially trach infections. With me being so medically complex, if I get something as simple as a common cold I could end up admitted into the hospital for a few days to a week depending on how long it takes me to recover. With all my appointments and therapies sometimes my mommy and daddy have to miss work so that they can take care of me so that they can make sure that I am safe and taken care of because they love me so much. Sometimes it is hard for them to pay for my medical bills, or household expenses because they have to miss work to take care of me, but they never stop because they love me. My mommy and daddy are the best, and God is taking care of me. Our journey has just begun, but with God and my mommy and daddy I will be able to handle anything.

Hi my name is Penny and I am Joey's mom. Joey is such a blessing to have in our lives. God has truly blessed us with him. Joey is such a fighter and works to overcome all the obstacles he can. Joey has 3 half brothers (19, 14, 13), a half sister, (15) and a foster brother. We had always wanted to do foster care and after having Joey we decided to take in a foster to adopt because we had heard that special needs children it is hard for them to find homes. I have over 18 years of experience working in Early Childhood Education and with that and all of the knowledge I have obtained we knew God was calling us to help another child in need so I had let a friend of mine know that if there were any children who needed a home to let me know. We ended up taking a 4 year old little boy in who has autism. He loves Joey too and will go and watch him in his crib or play next to him on the floor. His brothers love him very much as well. They are all about learning about his cares that we have to do on a daily basis ex: his trach care, his g-button care, his feeding, his medications, and even therapies that we work with him on.

Joey has made a difference in so many lives since he was born from the doctors to the nurses, our friends, our family, our church. With him being medically complex though sometimes it is hard for my husband and I to work because of multiple doctor appointments, or admissions to the hospital which leaves money a little short or he also has things that we need for him that are expensive that we just cannot afford to buy and the insurance won't cover and even a van that is big enough that we can have his medial stroller, his car seat, and ventilator in and be able to travel to appointments. Any help would be greatly appreciated and if you cannot donate sharing would be amazing as well. Help us make sure that Joey can get everything he needs. Thank you for your help! God Bless!