Cassidy T. - Love Quilts - 2010 Children!

Cassidy has been fighting many things in her life since she was born. I always knew that something was wrong but I never could get the Doctors to agree. On August 15, 2007 she had a MRI done at Kosair in Louisville before I could get her a fourth of the way home her pediatrician was calling me to tell me they had found some crowding of her brain and spinal cord on her MRI.

Chiari Malformation is the name of what she has. I had no idea of the road we were about to take. Later we would find out that she has Syringomyphelia as well. Like so many other children she will have to llive with this for the rest of her life there is NO cure for what she has. Cassidy will never be able to play her soccer again that she loves so much and was so wonderful at, until she started to lose her coordination. Falling at times while walking, numbness and tingling in her hands and arms. Prayer is what we all need to do! Not only for her but for all the children is what she says.

She underwent her first surgery for Posterior Fossa Decompresion at Vanderbilt Children's Hospital. We are at home right now but have had to go back a few times for some complications. She isn't able to return to school at the moment so we are on homebound. We have to go back to the Doctor to see when she will have another surgery. The doctors say this is just the first of surgeries she will have to have. We have hopes that the decompression surgery will help the 2 syrinx she has in her spine, if not they will have to place a shunt in each one and redirect the fluid into her abdominal cavity. We along with our church pray very hard that God will help her overcome all of this in her life. Cassidy also battles with a Developmental Delay as well as Speech problems and ADHD. But she is one of the strongest people I know. My princess in life, my best friend when I get sad about it all, she is a wonderful child to her family.

Cassidy has battled some at school as well children making fun of her because of her speech, and not wanting to play with her but she always holds her head up in front of every one...UNTIL she gets home. Cassidy has a mission in life and that is to get well to help other children like herself to find a cure for this awful disease. www.asap.org The ASAP organization has helped me alot, sending emails and monthly newsletters about CM and SM. So Lets All Pray To One Day Find A Cure For This!!! You can also visit www.conquerchiari.org to find out more information. So PLEASE keep Cassidy in your prayers that one day they will find a cure for this!!!

Cassidy is now having to get ready for a Nueropsychological evaluation. We still are getting practically no where in school and she wants so badly to learn. I have nevr met another child like my daughter that is so eager to learn and be like other children. We have been having to make baby steps and yet so many still dont understand this awful awful chiari. The syringo she has the doctor says that the cyst is gone but can come back at any time and still we fight and struggle sometimes on a daily basis with all the after effects that the cysts has left behind. We have come to know so many that are going through the same thing that we are and we continue to pray for them as well. Please help up pray in our battle with ACM and SM

Update: July 2009

The cyst was never gone the doctor over looked it I am so mad and frustrated. We are now getting ready to go back in for more MRI's on the 14th of October 2009 and to see the nuerosurgeon again to see what can be done to help her and all her pain. Cassidy is a wonderful child she is so caring and wants to be liked by everyone although she is shy she just doenst know how people will react to her. she wants so badly to be like all the other kids but we reassure her she is so special in so many ways the way that she is right now. We continue to pray on a daily basis for one day there will be a cure for Chiari.