Miracle for Marine
Marnie was diagnosed with Rett Syndrome when she was 2.5 years old. It was first thought to be Autism. Upon further testing and observation, it was decided she had Retts. As parents, we were devastated. All of the hopes and dreams we had for our precious little girl were gone. She would not lead a “normal” life.
Rett syndrome is a unique postnatal neurological disorder, and not a degenerative disorder, that is first recognized in infancy and seen usually in girls, but rarely seen in boys. It has been most often misdiagnosed as autism, cerebral palsy, or non-specific developmental delay. Rett syndrome strikes all racial and ethnic groups, and occurs worldwide in one of every 10,000 to 23,000 female births. Rett syndrome causes problems in brain function that are responsible for cognitive, sensory, emotional, motor and automatic function. These can include learning, speech, sensory sensations, mood, movement, breathing, cardiac function and even chewing, swallowing, and digestion.
Marnie was very tiny when she was younger. She would eat but she does not chew her food well enough to get the nutritional value out of it. She had surgery to have a G button put in. That was a tough decision but it has made a world of difference. Marnie has grown and flourished since having that put in.
At the age of 8, Marnie started having seizures. They began to get worse. In December 2012, Marnie had a VNS (Vagal Nerve Stimulator) implanted to help control her seizures. She still has them but it has greatly helped.
Marnie was hospitalized in August 2012 and again in February 2013. She became weak and dehydrated. It took months to become healthy again.
We received notification about Phase 2 of the trial in Boston. We did not get accepted into Phase 1. I was not even going to fill out the application thinking we would never get in. We received an e-mail requesting we submit our application. It was like God was telling me I should REALLY do this. I completed the application. Within a few days of faxing it, we received notification that they needed more information. As soon as we got the item from our pediatrician, we faxed it in. We received a phone call that they were looking at our application. They would call us by the end of the week. About an hour later, they had us scheduled for a pre-screening. We flew to Boston. We were still not certain if Marnie would make it in. That Friday we received a call. She was chosen! We started the trial in Boston in May. For now, Marnie gets two injections daily. This is a double-blind study. We do not know if Marnie is currently on the medication or placebo. After 20 weeks, there will be a 10-week wash out period. Then, she will be on the opposite of what she is exposed to currently.
Marnie is non-verbal but her eyes and her expressions speak volumes. She loves her family, friends, and Dora the Explorer. She enjoys swimming and being outdoors. It is our hope that this trial will reverse some, if not all, of the symptoms of Rett Syndrome Marnie endures daily. We have renewed hope and faith that our little angel will improve through this study. Maybe one day she will be able to thank you herself. But, for now, we thank everyone who made this benefit possible. It was a huge success. We couldn’t have done it without you.
On Sunday, a fundraiser was held at St. Mary’s church in Bremond to help raise money for Marnie’s benefit. The event had a silent auction, a BBQ lunch, miscellaneous items to buy, and drawings for door prizes. You could also just donate money. Mike Groholski won a bench that held a lot of Texas history. Dorothy Meadors won a $500 gift card. Betty Bell won a quilt. Mason Pruitt won a $250 gift card. And the Law Office of Shane Phelps won a Kindle Fire. They collected over $10,000 in donations for the Marnie Andreski Benefit.
All in all, the fundrasier was a success and the family would like to give a big Thanks You to all who contributed and helped. They really appreciate everything.
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