Can you tell the difference?

 

 

One keeps him healthy, happy and carefree

The other one homebound, sick and lifeless

One keeps him swimming, skiing, and

riding rollercoaster rides

The other one hospitals, doctors, and

long car rides to these places

 



 

The company said they changed nothing to the label; tell this to my child…

he does not know how to read labels. 

He only knows one day he is fine, the next not so much.

 


Safe for Mack

Not Safe for Mack

We are going to be testing the new label one more time (already done it 3 times) but we have to…. If it does not work, my child will be left with no safe food source because a company did not change anything, but they cannot tell me their supplier source or from which plant the product was manufactured, because those are their protective rights.  Where my sons’ right to have  his safe medical food that was prescribed to him by his doctors? 

 

Where is my sons’ right to life? 

I need help right now trying to find his safe until I can find a safe replacement or get the company to reveal what changed or what facility the safe can comes from...

DISCLAIMER: These pictures are property of Mack and family. No copying or use of pictures or stories are permitted without written permission from parents.
 

Lego LEGAL!!!

 

Today is the day when our little boy has become

Lego LEGAL! 

He has found his new love in Lego building

and letting his imagination run free

 with creating houses and cars...  

Despite all that he has been through

I love seeing him being a happy and loving child.









DISCLAIMER: These pictures are property of Mack and family. No copying or use of pictures or stories are permitted without written permission from parents.

 

Cavity Free CLUB!!!

Despite being g-tube fed and not having any safe foods or toothpaste.  Our little one has joined the Cavity Free CLUB!!!
























































DISCLAIMER: These pictures are property of Mack and family. No copying or use of pictures or stories are permitted without written permission from parents.

Imagine...

Imagine…sitting at the table with your family.  Looking down at your plate and knowing that is your last meal… 

Imagine… feeling strong and healthy, running around carefree and loving…. Knowing that tomorrow you might not be because you have no food… 

Imagine… smiling and loving, knowing that soon you will feel pain and not want anyone to touch you.

Imagine… every food you provide for your child makes him extremely ill.

Imagine… being a little boy loving your family, to have it all taken away because the formula that has kept you alive has now changed its formulary without your mom, dad or doctors knowing.  To be left with no food.

Imagine… being a doctor and specialist and not knowing how to help this child.

Imagine… being the mother or father of this child and how your heart , mind and spirit feels knowing that you cannot provide for your child, because there are no laws governing medical formula changes without notifying or solutions.

Imagine...  being a little boy and having no food, in a country that is supposed to be the richest and most caring in the world.



 

Imagine not being able to hold your child again… 

This is our reality:  In the next month I will be going over Mack’s life and how FPIES and EoE has ROCKED our world and sent us on a ROLLERCOASTER ride of a lifetime…

DISCLAIMER:  The pictures used in this and all posts are property of Mack and family. 

Please no copying or using his pictures or stories without written permission first from his parents.