Our baby Mannon was born on Sept 19,2019, a beautiful baby girl. Healthy at birth and scored exceptional on her APGAR testing which is a normal newborn screening. Her newborn labs were drawn to be sent off and tested as every newborns' are. Her parents were notified at a later date that her newborn screenings had been "lost" and that they needed to bring her back to the hospital for another blood sample to be drawn. They did as asked and left it at that. A few days later they received a call that one of her labs came back as abnormal and were asked to bring her to Morgantown WV to Ruby Memorial for further testing. These tests proved to be the most devastating news that a parent could receive. On December 11, 2019 they received a call informing them that their beautiful baby girl had tested positive for SMA. Spinal Muscular Atrophy is a very rare genetic condition that occurs when the mother and father both pass down a mutated or delete gene through chromosome #5. We had no clue that Robbie and Sarah both were carriers of a SMN1 delete . (SMN stands for spinal motor neuron) As it turns out they both are carriers and they both passed down the delete gene to their baby, resulting in the baby being born without the SMN1. As a consequence of absent or low levels of this protein, the motor neurons in the spinal cord degenerate, resulting in atrophy of the voluntary muscles of the limbs and trunk. During early development, these muscles are necessary for crawling, walking, sitting up, and head control. Baby Mannon was however born with 3 copies of the SNM2 protein. These backup proteins produce about 10% of the neurons needed for viable muscle function and control. So, without treatment, once these backup neurons are depleted we will begin to see continued deterioration of her muscles eventually continuing onto vital muscles such as chest and throat muscles that cause difficulty breathing and the inability to swallow resulting in the need for ventilation equipment for breathing and a permanent feeding tube for nutrition. The result of the rapid atrophy of these muscles and the inability to use them is death.
There is one treatment that Mannon is a candidate for. It was just recently approved by the FDA, and proves to replace the missing gene in her body with a formulated copy which would attach itself once introduced by infusion in her body. This formulated gene would then reproduce and begin making copies of the missing gene into each of her cells and send signal to her body to start copying that SMN1 protein. This is a preventative treatment that has proven to stop or significantly reduce the effects of this debilitating disorder. If Mannon were to receive this treatment before 6 months of age it is highly likely that she would never show major symptoms or suffer the major issues of muscle paralysis or premature death. This treatment is called Zolgensma and it comes with a hefty price tag of just over 2 million dollars. This is a one time treatment per patient. Arguably, the cost for this treatment would be far less than medical costs associated with continued ventilator support and other medically necessary procedures, testing, and medication needed for this condition as it progresses.
Robbie and Sarah have health insurance through his employer. We received a preapproval for her lab testing and all other tests involved with getting this treatment. Mannon passed ALL of their required testing to make sure that her body was healthy and would accept this treatment. Then the hospital sent the preauthorization for payment for her treatment and it was DENIED. Their reason for denial was that she is not currently showing enough symptoms of the disorder, and that she has too many copies of the back up protein SMN2. This is a preventative treatment, meaning it is formulated to PREVENT the signs, symptoms, and deterioration of the muscles. We are doing everything in our power to appeal their denial but will quickly run out of time!! Their insurance will NOT even consider the treatment after 6 mos of age. Her doctors have told us that hours=neurons, meaning that the longer it takes to get this treatment the more likely she is to suffer more symptoms as the disorder progresses through her body.
We need to get the word out as quickly as possible and are asking for help from ALL of our racing friends, family, and communities and anyone who is willing to share our story! Every single penny raised will be used to pay for this treatment and any care that Mannon needs during the treatment. I have always heard that the racing community pulls together in times of need. I am asking now, for every single person to share this story, share this page, PLEASE donate if you can. Every dollar counts and is greatly appreciated! We also have a bank account set up at Peoples Bank in Parkersburg WV under the name of Mannon's Muscles if you would like to donate that way. Address:
c/o People’s Bank
903 Division St
Parkersburg WV 26101
There is additional information about this treatment on the wesite zolgensma.com . Please send your thoughts, prayers, and good vibes our way! The more people who share, the more people we reach, the more this story gets attention...the better chance we have to save this baby's life. If 110,000 ppl would donate $20.00 each then our goal is met and she will receive the treatment! Please share our story and help us in the fight for Mannon's Miracle!
Thank you for your time, thoughts, prayers, and donations!
Jima (Mannon's Mimi)
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