I know I am going to receive back lash for saying this, but I have to say it. ALS is a horrific disease and I cant imagine what those who have it and their families go thru. However, being the mother of a child with a special needs child I cant lie and say it doesnt get under my skin a little. Chloe has yet to be diagnosed or a name for her disease and there is no medical intervention or any amount of money in the world that will regenerate her deteriorating brain matter. I have met and become close to mothers of children with Battens Disease. The medical community puts no money into finding a cure for this disease bc it is so rare and why waste your time and money finding a cure when you can just throw it to the side and worry about it later....or profit off of it. Yes, I said it. Whether you believe it or not, it happens. I wish that Battens Disease had this much response and recognition. Just a small fraction of the almost 9 million dollars that has been raised for ALS. I want you to read the next few paragraphs. It is a post taken from Sophias Journey. This is what parents and children of Battens Disease live with and suffer thru everyday. Her mother and my friend Jaime posted this. This is her life....................this is Sophias Journey: Did you know that you can drown in your living room? No pool, bath tub, or pond needed. Its true, I watch Sophia drown a little more every single day. When the hospice doctor told us at our last visit that Batten Disease will not kill Sophia, rather, she will drown to death, I thought that was pretty graphic. My daughter will drown. That is a scary thought but so accurate. Sophia works so hard to breathe. She has been on continuous 3 liters of oxygen for several weeks now and she requires bipap for more than 16 hours per day. Her lungs and mouth, throat muscles are getting so weak. She can no longer swallow secretions and saliva so it just sits in her chest, in her throat, in her mouth. It slides down into her lungs and sits. Sophia will not cough and despite suctioning, we cant get it out for her. Believe me, we try. Oh do we try....Sophia is suctioned probably 100 times per day, easily. Suctioning requires a long thin tube to be inserted into her mouth, down the back of her throat and then a loud machine sucks whatever liquid the tube finds. Sometimes we get a lot out, sometimes we get nothing, and sometimes it is too thick for the machine to pull. Regardless, as soon as that round of suctioning is done, it all comes right back. Thats how the body works. It secretes saliva and never stops. So we are fighting a losing battle. Today I sat on the couch thinking that quite possibly, I am going insane. Insanity is doing the same thing over and over and expecting a different result. This is me. I do these treatments on Sophia over and over and over, hoping, praying that it will work and give her some relief. But to no avail. Many moms have told me that they are thankful for the machines and equipment they have for their children. Well, sure, when they work. We have thousands and thousands of dollars worth of equipment all over our home and every bit of it is worthless. It does nothing. Vest therapy, cough assist, suction machine, nebulizer, etc. What a waste. I wish I could be thankful for those machines. I wish Sophia was the lucky one for whom the machines would work. I sat with a group of moms at the conference....beautiful, smart, loving women that I consider friends. While they discussed lab work, biopsy slides, research labs, loss or decrease in skills....I just sat there. I had nothing to add. These are not my worries. These are not my concerns. Sophia cannot breathe. It doesnt get much more basic than that. When the diagnosis of Batten Disease is given to a family, the doctor tries to lessen the shock by adding that although there is no cure, the symptoms can be treated. But this is a falsehood. Sophias subclinical seizures (in her brain) have been going since she was two months old. Sophias abnormal movements that cause her such agitation have been going since she was two months old. Sophias breathing issues, discomfort, pain, anxiety, and loss of control of her secretions....well, there is no treatment for those. She will drown. She is drowning. I sit with her on the couch in tears, watching her entire body constrict as she tries to take in air. I hear the wet lungs, I feel the congestion in her chest. I breathe easily; Ive never required oxygen. My two year old cant live without it. So, now what? Whats next? This disease has broken me. I am not the same strong, confident person that I was in 2011 when she was born. I dont know this new person but I dont like her very much. She is weak and scared and cries all the time. She whines about her struggles and she fears that she will wake each morning. She goes to bed, happy to have one more day behind her but when the alarm goes off in the morning, there is no time for anything except Sophia. It is a jump from the bed, rush to her room, and immediately flip her on to her belly for percussive cup therapy kind of life. It is a pick her up, put on her Vest for therapy kind of life. It is a cough assist, suction, nebulizer, repeat kind of life. It is a why am I doing this over and over again with no results kind of life. I want someone to tell me it is the end. I want someone to say that she will not improve. I want someone to make the decision and remove it from my hands. Its not fair for me to be the mother, caregiver, doctor, hospice worker, neurologist, GI, pulmonologist, therapist. Watching Sophia struggle for air is the hardest thing in the world. It feels endless. She is tired and we are tired. Its too much for the soul to bear. God please grant us peace. I would give and do anything for all of the children on here with any disease. It is truly amazing what we can do when we put our minds, heart, and souls into it. Would it save Sophias life or any child with Battens Disease life today, tomorrow, or next year, no, but it would save the lives of so many children in the future. Maybe your child, grandchild, niece, nephew or friend. Think about it.... What a beautiful tribute to these amazing souls that have endured so much, that we could work so hard to save our children of the future from knowing this pain. If you would like to donate and learn more about Battens Disease, please follow this link, bdsra.org, take the time to read about it and share. Help raise awareness. Help find a cure for these sweet angels. I am sorry if I have offended anyone.
Posted on: Thu, 21 Aug 2014 02:22:43 +0000
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