Get Sissy to the Periodic Paralysis Conf

Bethanie AKA "Sissy" has been struggling with RSD (Reflex sympathetic Dystrophy) for about 3 years now. It has progressively gotten worse in the past 9 months where she has under gone 4 procedures so far in 2013 and likely more to come to help manage the chronic pain from this disorder. Recently she was also diagnosed with Periodic Paralysis. Which is also another disorder that will be long term that she is having to learn to cope with. Periodic paralysis ia a diseases where people get muscle weakness and/or muscle stiffness. This happens because the ION CHANNELS in the muscle membrane are faulty. The faulty ion channels prevent the potassium and sodium from being where they need to be. The misplaced ions cause the ion channels to shut off inappropriately, causing weakness, or not to shut off inappropriately, causing stiffness. This means that at any given time in a day Sissy can go from walking to on the ground in seconds and not be able to walk. She calls this her "Spagetti Noodles Legs." She gets multiple episodes a day. Activity is a big trigger in setting off an attack. Sissy is 9 years old and wants to be active but knows the consequence of doing activities as well. She is having a hard time knowing she has to deal with all this. Who can blame her she is just a baby girl. Sissy has a hard time being the little girl that has to use a walker or be in a wheelchair at times. We have found the Periodic Paralysis Association (PPA) that has the organization that meets up every 2 years for all the members to come together and meet each other. This is going to be very beneficial for Sissy to attend to see that she is not the only child that is going through all of this. We pray for healing as well. We know that everything is in God's hands and we will wait as long as it takes for her to be healed. It may be in this life time or the next. Either way we are pushing forward in faith that we can get her the treatment she needs at the appropriate times.
We live in San Antonio, Texas and the conference this year is in Orlando, Florida. We are looking at taking her and would love all the help we can get from everyone. Every dollar helps. We would like to say THANK YOU in advance for your prayers and kindness of giving and may God Bless you.
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    • $20 
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  • Virginia Rogers 
    • $25 
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  • Esther Goldberg 
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See all

Organizer

Hollie Anne Bird Brown 
Organizer
San Antonio, TX
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