22 Oct I am scared …
There are certain times throughout our family’s struggle with a rare disease that I am actually scared. Now is one of those times. I try so hard every day to stay positive and strong. I sometimes feel like I am about to break but I know it won’t do any good. Life is about perspective and I truly believe in that. I have to practice patience. I have to show joy and hope. If there isn’t any hope than what do we have left? My family and friends watch me and show their admiration, support and love. I don’t want to let anyone down. I don’t want to let myself down! I don’t want to let Cali and Ryann down. My family depends on me to be there for them. If I show fear it will scare them! “It’s all ok”, I say. We are blessed because it can always be worse. We are a strong family and we will make it through anything!! This is me and who I am. It’s important to me and there isn’t any other way to be.
Today I write through tears streaming down my cheeks. I am not smiling. I am crying and scared. Our doctor says that Cali and Ryann’s most recent MRI’s are showing that their cerebellums are getting worse. This is very scary because mitochondrial disease is typically progressive. Their cells are lacking an important protein and our cells continue to multiply. The bad cells reproduce. Cali and Ryann both have a mitochondrial disease that is very rare. We don’t know what is coming next or the progression of their disease because there aren’t enough cases to compare them to. We are hoping that since Ryann has been doing so well that their disease could be different. Since it’s so rare maybe it isn’t progressive. I am sure you can see why I am crying and why I am scared. We are getting second opinions and looking for a new neurologist and this is what keeps us from freaking out!! We have to continue to hope!! We will keep everyone updated. XOXOXOX
Brook HydenPosted at 19:20h, 22 October
Love you and your beautiful family. Know that it is okay to have bad days and its okay to be scared. Accept that, work through it, then go on being your positive self. You are amazing, and beings scared and sad sometimes doesn't make you any less so! Love you!
Ashley ArnoldPosted at 06:47h, 14 November
Hi there my name is Ashley Arnold and I just started my journey scouring the net. My youngest son has had quite the year… diagnosed with neutropenia and some other health problems and they finally ran genetics. They said he has a gene mutation that causes Complex 1 deficiency. I am reaching out as I have no idea what to expect or what to feel. I don't know if maybe you can email me or send me a message on FB so I could speak with you. we go in for our first MRI and heart echo next week. thank you so much and I will be praying for your sweet girls.
Alexander SilvaPosted at 07:03h, 03 January
Nice Article…. I Like Your Post………..
Cynthia RossPosted at 23:32h, 27 February
Sweetheart, Tears stream down my cheeks too as I think of everything you have gone through and all you continue to go through on a daily basis. You know I believe you are one of those rare angels living on this planet. I am here for you — just call me. Anytime and I'll be there.