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What's happens if you can't afford the surgery? The hospital wants $900 upfront. The total cost is 1,717.38 . I'm so lost and confused and scared. We have insurance but that's out pocket cost. I'm in Texas if that helps ... See MoreSee Less

1 week ago  ·  

My Beautiful Angel with a Big Heart ♡ Jennifer Mejia ♡ ... See MoreSee Less

2 weeks ago  ·  

I will have to look up more more emails. To give a little history..

Xavier has Hypertropic Cardiomyopathy. As well as behavioral that has caused a hindering on his education. I have tried to enroll Xavier into Manitou Elementary School 2012-2013. They assigned him to Edison Elementary which was at least 7 miles driving. Public transportation 45 minutes to a hour. I allowed the kids to go to Edison due to the fact that Manitou didn't have a nurse at the site everyday. The reason they gave me at this time. It was very hard to reach my children with no family here as well as no way to get him in time of Emergency.

August/September 2014

Due to my house flooding we moved to University place school district. The younger two kids had to go to 2 different schools. Because they couldn't offer Xavier a "smaller classroom" experience. Mind you the teacher and the Special Services team at Sunset Primary was very Successful in helping me understand and know Xavier's IEP and Evaluation. As well as know where he was at education wise.Behavior wise and Sensory....etc. I knew these things as far as home and what helped me. But also how to help the teachers as well.
I am not good at writing. So bare with me...
I took a positive out of a negative.
Now that we have moved back to Tacoma and the school in our area is again Manitou. New Principal Mr. Mandragon.???... Told me that Xavier couldn't go due to the fact no one has training on how to use the AED machine, the defibrillator. So at the time that was Tuesday of last week. I was very irritated and emotional because four kids at 4 different school and mind you before that in a school Tooo Far to reach my kids... The Mr. Mandragon asked for my number so he can contact me . Instead i get a email from Mrs Fawcett from the district about my child back in Tacoma School district...HOW THEY ARE LOOKING FORWARD to assisting me..or whatever...
I have him enrolled expressed that he shouldn't be sent to another school due to the fact that they aren't trained to use a AED machine. I am getting the run around. I called today Friday to see if the have scheduled the bus pick up time for the kids... The Assistant Principle told me that they have sent Xavier's IEP to ECAP???? And they will decide on wether Xavier will be attending Manitou or Edison.... I am past frustration... I don't want to yell or get irate with these people anymore... Then i will look like a unfit person.....So please tell me if this is discrimination something has to give because I am feeling it on like four different levels...there are a few different descriptions on discrimination.???

FYI...Before we left Edison Elementary the principle Mrs Sheppard told us that Tacoma Schools had the machine in the schools and on the bus because of Xavier... at the time 2013-2014.
As of 09/15/2015
I was informed that my child was never put into the computer after i was told to enroll him into Manitou. I have also been aware that my son will have to go to school at least 15 miles from my home... I was also told to claim myself as a homeless family. I dont feel that this is helpful to my son or family.. I am reaching out to alot of people dont know how or who...
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2 weeks ago  ·  

How do i become a member of this association? I live in nairobi, kenya. BERNARD APPUT ... See MoreSee Less

2 weeks ago  ·  

For families affected by genetic cardiomyopathy please consider this opportunity - Affairs of the Heart: Living with genetic cardiomyopathy ... See MoreSee Less

Affairs of the Heart: Living with genetic cardiomyopathy

October 3, 2015, 9:00am - October 3, 2015, 2:00pm

Kensington Court

Join us for a free conference for adults and families of children living with genetic cardiomyopathy. Sessions include: - Management of atrial fib and devices - Recognition and treatment of advanced heart failure - Surgical therapies for HCM and DCM - Family, genetics and genetic testing - Research in genetics, stem cell modeling of cardiomyopathy - Special considerations for the pediatric population - Psychosocial aspects of parenting a child with cardiomyopathy There will be a separate program offered for those under the age of 18. This program will be broken down by age group: 6-8, 9-12 and 13-18. Presented by the SHaRe Cardiomyopathy Registry, University of Michigan Cardiovascular Center, C.S. Mott Children's Hospital, Children's Cardiomyopathy Foundation, Hypertrophic Cardiomyopathy Association, and Myokardia, Inc. More info and registration at:

3 weeks ago  ·  

Curious: What's the purpose of the MRI, preceding seeing an Electophysiologist (to discuss an implanted defibrillator)? We've been wondering. Thanks. ... See MoreSee Less

4 weeks ago  ·  

I have just had my heart scan results and I have thickening of the heart muscles. I have rdeb recessive dystrophic epidermolysis bullsa which puts me in a higher risk bracket. I would like to find out more about the condition
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4 weeks ago  ·  

Does anyone respond on this page? ... See MoreSee Less

1 month ago  ·  

HCMA Community

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