Silas' Saga

Hi friends!

My name is Silas Brown. I am six years old and have already been through more than the average kiddo! When I was born I faced some very large complications during my Moms labor, which have led me to my diagnosis. HIE (Hypoxic Ischemic Encephalopathy a.k.a Loss of Oxygen), Spastic Quadriplegia Cerebral Palsy along with Secondary Microcephaly, Plagiocephaly, Epilepsy, Severe Developmental Delay, GERD, Strabismus, CVI (Cortical Visual Impairment), Visceral Hyperalgesia, Dystonia, Non-Verbal and Non-Ambulatory. I am tube fed 24/7 through my J-Tube and vented 24/7 through my G-Tube. I take over half a dozen medications to treat my multiple symptoms and receive my meds three times a day and as needed for pain. 

Despite the complications that all of these things bring I am a feisty little fighter, determined to prove all my doctors wrong who have told me that I will never walk or talk. I love music, swimming, playing with my favorite toys, biking, hanging out with friends and going to school! I love my Mama and Dada very much and I’m pretty positive this feeling is more than mutual! I depend on them to carry me around, give me constant attention, and to keep me working towards reaching my goals!

My weeks are filled with therapies, doctors’ visits, and school. I visit Project Walk Boston weekly for two hours and I have an intensive home program for a therapy I do called Masgutova Neuro-Sensory-Motor Reflex Integration (MNRI). My line up of specialists include a Gastroenterologist, Pulmonologist, Neurologist, Pediatric Specialist, Ophthalmologist, Physiatrist, CCS Team (Complex Care), PACT Team (Palliative Care), CP Team & Growth and Nutrition Teams at Boston Children’s and my regular PCP. I have awesome teams and specialists and I’m very thankful for them! I also receive private duty nursing six days a week and they are with me for nine hours a day to give my parents a break from my care! My parents love me to death but my care routine is pretty extensive! 

The cost of Medical Bills, Alternative Therapies, Alternative Surgeries and Equipment for kiddos like me is outrageous and which has led us to rely on community and fundraising to keep me going strong and to give me the quality of life that I deserve. Right now, we are focused on getting to one MNRI conference a year either a five day or an eight-day intensive. We are also adding in one Napa intensive a year which is a three-week intensive program that combines the techniques of Neurosuit, CME and Feeding Therapy/ESTIM. And finally, we are attending Project Walk Boston weekly to do their G-EO Robotic Gait Training program and an extra hour of intensive physical therapy. All three of these life changing therapy programs are out of pocket so any help is greatly appreciated, and without these programs I wouldn’t be where I am today physically or developmentally. 

I want to thank you all for helping me and my parents out, without you I wouldn’t have come this far. It’s because of you guys that I have been able to make so much progress toward my goals, and I can’t thank you enough for that opportunity. I keep all my supporters updated on my Facebook page at www.facebook.com/silassaga so that you know how I am doing on a day to day basis. Thank you all so much for supporting and loving me! Thank you for considering a tax-deductible donation to my Annie’s Angels account! 

Love, Silas