Tag Archives: MDA

Spread the Word, Lend a Hand

** Update**  Christion Isaac-Alexander Shaw  6/20/09 – 12/18/14   Please consider helping with this fundraiser to help with the arrangements and passing on this story of Christion and his life.  Thank you – Maggie **

 

Sorry that I haven’t posted in a while.  I have been experiencing many life changes, most positive… a new relationship, new additions to the family with more on the way, a little travelling with a whole lot of visiting, etc.

Today’s post unfortunately is not so upbeat.

Today we’re stepping up to a window into the life of an incredible single mother and her two sons… a one seven-week old named Cameron and the other a five-year old named Christion who has muscular dystrophy.

 

10411891_10152809936304223_8213019713494721850_n

 

This is my friend KaShonda and her boys.  Christion is 5 years old and has Nemaline myopathy Muscular Dystrophy.  He’s a great kid.  He laughs and plays and watches TV… loves Handy Manny and was completely enamored with being able to watch PBS Kids on my iPad and snuggling with me while Mom and I got to spend time together.  In many ways Christion is just like any other 5-year-old.

 

 

10494703_10152544660644223_1438197855785837736_n

 

Then there’s all the special extras that do not surround a typical 5-year-old… oxygen, suction to clear his lungs, a belt that provides air pressure that simulates pounding on his back to loosen the mucus in his lungs, wheelchairs, monitors, pulse oximeters, etc.

While as a country we’re trying to get kids away from the happy meals, Christion has never had one and probably never will.  Christion doesn’t eat, he has a feeding tube directly into his stomach with nutrition that comes in a pouch.

 

10646657_4574978348115_8600501728360998714_n

 

Christion doesn’t have babysitters or daycare, but has home nurses.  In fact KaShonda even went to nursing school just so she could not only be better prepared to take care of her son but so that she would be able to work at home with him.  It doesn’t get anymore incredible than that, truly a devoted mother.

Sadly just a few short weeks ago, Christion’s health once again took a down turn when he developed pneumonia and wound up in the ICU.  Finally improving enough to be moved out of ICU, you can see that spirits were high.

 

Tickle time!
Tickle time!

 

Later this very same day, November 28th, Christion coded.  Medical personnel worked on him extensively to revive him but he was down for 12-13 minutes.    This is Christion right now…

 

10846415_399458066873191_1354376197947122985_n

 

Heartbreaking is the only word that applies and yet that word doesn’t go deep enough.  He is 5 years old and should be writing letters to Santa, not hooked to monitors unresponsive.  His Mom should be trying to sneak in presents to surprise him with, not crying bedside in a hospital room, praying for her son.

10377545_10152818977849223_2870303999933511563_n

Then there’s Cameron.  For those who would say that thank God the 7 week-old is “normal”, they are incorrect.  While Cameron is quite healthy he is in no way normal.

Seven week-old babies should be in their mothers arms, not bounced around to relatives so his mom can keep her vigil at Children’s Hospital.  Cameron should have a big brother that can teach him to throw a football, intimidate kids who try to bully him, teach him how to date, how to drive and be his best friend.

UPDATE:   While the CT scan and EEG’s looked promising, an MRI has shown that Christion has suffered massive trauma on his whole brain and the prognosis is not positive and family is preparing for the inevitable.   Prayers are still needed for this family, for strength and courage to help them along their difficult journey.  Any donations would help considerably.  Please consider sharing this post or the fundraiser page to help.

Donations for Christion

Donations for research can be made to:

Muscular Dystrophy Association
National Office
222 S. Riverside Plaza, Suite 1500
Chicago, Illinois 60606
888-HELP-MDA
(888-435-7632)

 

If your children are healthy, give thanks.  Not just once, but every day.  Life is fragile and it can be short.  Please take the time if you can to help a friend or neighbor who may need that extra hand.  Consider donating to research to continue the fight for a cure for this and other diseases and disabilities that hurt children and torment parents.  Even a few dollars a month can do a lot of good.

Have a safe, happy and healthy with your family and please join me in #PrayersforChristion.  Please share this story and allow his story to open hearts and maybe a wallet or two.  We can’t have too many people praying for him or sending positive energy their way.
{{{hugs}}}

Maggie

Advertisements