Our 10 year old son is the kind of kid who gives his toys away to kids who have nothing. He will sell his toys or donate his allowance to help feed the homeless. He would read to the pups in a shelter to cheer them up. He would rescue any dog he could to show them love. He is an amazing, kind hearted kiddo who just wants the best for everyone. Well now he is in need. If I told him I was doing this he would say, "NO mom we will use my allowance or I can make a lemonade stand!"
Our son has been battling an autoimmune illness since 2017. He was finally diagnosed in May of 2017. He has been on long term antibiotics now for over 6 years. This illness causes brain inflammation to the basil ganglia part of the brain. When this part of the brain is inflamed it causes OCD, TICS, seizures, movement issues, decision making, emotional issues, learning issues, reward and addiction issues. He has a weak immune system and when he gets work done to his teeth or a viral infection it goes right to the basil ganglia part of his brain causing many horrible issues. We are not sure what caused this to happen to him. But there has been speculation that when he was born the nurse made a huge mistake, and because our son had been in my womb for over 9 hours ingestion meconium and having to be worked on for 45 minutes after birth, this resulted in a weak immune system. Around preschool age he was introduced to many illnesses including mono. His body just couldn't ever recover, as every few weeks he will ill. The constant back to back illnesses brought on inflammation to his brain. The EBV (mono) later turned into chronic EBV. We have seen many doctors all over the USA. Many have agreed that IVIG would be the only way his body will regain the antibodies he needs. Since then we've been fighting for IVIG help for our son. Cigna refuses to cover it, even with a doctor peer to peer being done. The cost of a year of IVIG treatment is $108,000 and that will only increase with his weight. Given my husband lost his job in 2021 during COVID, this isn't something we can fund. We began to look into other possible treatments and met with Dr. Kellum at the Stem Cell Institute in Franklin, TN in October of this year. After much thought we decided we would begin helping our boy through stem cell. The middle of December his stem cells were taken. Now we wait for them to come back to begin infusions.
Treatment is much cheaper this way for us. We are looking at about 30k a year verses 108k. This amount covers his treatment and travel expenses to and from Franklin, TN. We will begin infusions on February 1, 2024. We will have to do anywhere from 3-6 treatments throughout the course of the year. We pray hard this will be his saving grace, and a life changing experience. Currently, our boy is struggling just to get through a day, and begs us almost EVERYDAY to make this ALL go away! We just want him to live a normal 10 year old life. Go to school, play with friends, enjoy sports with no stress, and be the fun and loving kid he once was.
So, I ask you kindly to PLEASE donate to him, he would do they same for you if he could. He is just an amazing boy. Thank you so very much for those who have donated and can donate. If you can't donate, please share. Prayers are always appreciated!
Much Love, Simons Family
xoxoxoxoxxoxox
