My name is April and I am a full-time mother to three children they are two girls and one boy. They are my life and I try so hard to do what I can for them My son has a rare incurable illness called Neurofibromatosis it shortens your life caused a abnormal brain learning speech sight stress anxiety depression behavior problems and he has developed tumors in his brain his cheek his eye and his spine he has adhd and autism .There’s lots of going back and forth with doing his tests with many different doctors I always have to go back to back and it’s taken a toll and costing so much money to travel and provide food clothing personal needs and making sure he is happy. I currently don’t have a job and it’s been really hard on us all with bills food and the gas to travel to take my son out of town back and forth to his appointments .. at times I feel hopeless helpless and so depressed not knowing what to do about all of this I’m just trying my best to try to be positive and pray for a cure for my son and love a long life even though this illness shortens your lifespan..but I juggle around with my daughters and my son who has a rare condition called neurofibromatosis there’s no cure for it..neurofibromatosis is a dominant gene it causes these coffee colored birthmarks all over him in many different sizes from tiny to huge they are known as tumors but marks all over him it can cause blindness in his eyes and it also Can cause him to go deaf..It’s been hard to focus especially knowing he has these tumors and there’s nothing I can do but wait to see his neurologist it’s caused him pain anxiety and even points out that he knows he is different constantly looking at himself in the mirror asking how come he has these all over his body and feels the tumor on his cheek and complains of pain or itchyness he has been bullied about how he talks and looks and how he acts..It’s been hard but been praying for a miracle and praying that the tumors don’t turn cancerous.I’ve been losing sleep watching over him making sure he doesn’t have a seizure as the doctors said when the tumors in his brain grow it puts pressure on the brain and causes seizures so I been panicking watching over him and even scared to leave without him wether it be me going to the store or with a sitter. He is brave sweet loveable little boy who loves nature loves animals loves to do spontaneous things with his sisters,his sisters give him his super strength as well as he is my strength. My kids always stick together and do anything to make each other happy through sadness the stress times. We are all we got.just want my son to be ok and my daughters during this stressful time we have encountered it’s causing him to miss class at school .My son has to be seen by doctors for the rest of his life due to this illness it’s caused so much fatigue depression anxiety emotional stress it’s taken a toll on me and my daughters as well as my son. It’s been hard to act like everything is ok when I no it isn’t I have lost faith the strength I am exhausted I feel weak so drain researching about his condition wishing there was a cure we tried to find remedies to help my son it’s been a huge stress on all of us we are all worried all the doctors appointments all the tests all the scares we’ve had and the not knowing what’s going to happen the fact that all of this is out of my hands it’s so hurtful I’d do anything to help my kids and try to provide as much as I can. It’s just so hard to focus and all this pressure all these thoughts of not knowing what’s going to happen to my baby and what to do and how to focus. to those wanting to know my son has a medical condition called neurofibromatosis which causes pain all over the body (also referred to as widespread pain), sleep problems, fatigue, and often emotional and mental distress tumors speech delay autisim symptoms behavior problems learning delays it can cause blindness and to be paralyzed it can also cause death if it gets worse…i was informed that as he gets older he can keep developing more of these tumors I am sadden that there is no cure, only treatment as they stated would be something like chemo to shrink the tumors he is currently taking koselugo to help treat the tumors that he has to take for a year so hopefully we see changes he is at risk of side effects from the treatment it causes rashes muscle weakness blindness and heart problems but he is enduring a serious amount of fear anxiety and stress…. Between trying to put food on the table, nurture quality time with my three children, doctor visits with my son,I am exhausted and searching for answers. I really appreciate you taking the time to read about my sons story about my sons journey we are still hoping for a cure ..again the side effects are that he can go blind and heart problems and muscle weakness and more so let’s pray for the best we appreciate all the love and support and so many prayers means so much and hope . We have had a lot of ups and downs but trying to make the most of it. It’s been hard on all of us and a lot of patience and waiting … we still have. Along journey up ahead.. times our little family have cried and mixed emotions about everything going on with my sons illness and bills and other extra things going on in our life that’s adding more stress.. I was told you can die from this neurofibromatosis it shortens your life ,so I’m hoping this won’t ever happen. I truly want to spread awareness for this illness because it’s never talked about I want others to know who have this that you are not alone and we are all in this together. trying to stay strong for my little guy.. prayers are always appreciated.Thank you. And god bless you thank you so much for reading my sons story we just found out anything helps it doesn’t matter if it’s one dollar. Thank you all for reading and godbless. may 19th 2024 that his bones are aging faster so I’m a bit worried about it and wish I knew why this was happening. His two sisters help cheer him up he’s such a fighter so brave please anything helps prayers and all god bless
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