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Scooped by Carol Mortensen
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specialheartz.com | @ThickHeartMom | specialheartz.com

specialheartz.com | @ThickHeartMom | specialheartz.com | MyWeb4Ed | Scoop.it

One family and their journey with HCM!

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Scooped by Carol Mortensen
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Fundraiser For My Grandson: ICD Surgery for Zak

Fundraiser For My Grandson:  ICD Surgery for Zak | MyWeb4Ed | Scoop.it

Help Zak, age 8, get the life-saving treatment he needs for his HCM!!

 

In 2008, Elyjah Zakai M. (nickname is Zak) was a normal four year old boy who enjoyed swimming, running and playing with his brothers.  He would become winded and tired - not to mention the one occasion where his extremities turned a light blue from poor circulation.  Not knowing what was the cause, we took Zak and his brothers to a pediatric cardiologist after a murmur was detected.  What we were told changed our lives forever.   "Don't blame yourself when he dies."  "You couldn't have done anything to prevent this."  "I have never seen a heart this thick."   Zak was diagnosed with hypertrophic cardiomyopathy.  His heart walls were three sizes too thick and the pumping ability was severely restricted.  The disease was handed down by his father, who had already lost two sisters and a mother to the same disease (though, at the time, was referred to by a different name: IHSS).  He himself had been diagnosed as well, but was told "the girls have it worse" so it was ignored.  Zak was no longer able to run.  He was told never to participate in any sporting activities for fear of cardiac arrest.  We moved to Houston, TX (from El Paso, TX) to be seen by the worlds best pediatric cardiologist and were told the same thing - his heart was ridiculously thick and it looked like Zak would probably progress past the "norm" and fall into the 5% who wound up in endstage (heart failure).   Today, Zak is eight years old.  His heart is getting thicker and he is now experiencing heart failure symptoms.  He is unable to walk without becoming winded.  He cannot play like he used to.  Stairs are no longer an option.  He needs additional medication, but cannot receive any until he gets an ICD implanted.  His father is also very ill, and Zak is having to travel between the ICU and home while keeping a positive attitude at what very well may be his own future. This is what we need to do: We need to get Zak an ICD.  To do this, we need a $250 deductible, plus 10% of the surgery costs ($5000) We will need gas and food to travel, and stay, at Texas Children's Hospital.  We live 45 minutes away. ($200) We will need the doctor copay before and after surgery for pre and post implant. ($200) We will need a trip to Ohio to see the experts in HCM care should Zak need more invasive procedures (such as a myectomy or a heart transplant).

 

This is why:

Zak has lost a grandmother, two aunts and nearly his father to this awful disease.  We need to get him an ICD to help manage these problems before his heart becomes worse.  There is no cure for HCM, but our hope is to allow Zak to be as healthy as possible for as long as possible... I want to give Zak the opportunity his other family members didn't have.

Other Ways You Can Help

We know times are rough and money is tight.. trust us.  So if you can't help, please consider passing along our information... Just getting the word out will help us out tremendously!

 

*** Just an FYI - the $25 perk is only the perk - donations can be made in any amount ($1 - $1000000) so don't worry... doesn't have to be $25.. and trust me when I say every bit counts, so THANK YOU for even considering helping!!

 

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