3-Methlglutaconic acidemia

November 21, 2006- January 9, 2008

Why My Child

I don’t understand this pain

I don’t understand why you had to go
I know I will see you again sweet child of mine
but still question why you had to go

Why me god why a child of mine
I my so angry so hurt
All I feel is pain deep inside
anger and rage of not knowing why

Not once, not twice but three times now
I know the pain and loss of a sweet child
I know one day all three will be in my arms again at the lords feet

I try to shove the anger down knowing that, you Lord do not deserve
I know you are by my side and feeling the pain I feel so deep inside
I know you are carrying me through this time
Because Im having a ruff time walking by your side

I know you didn’t cause this pain
So as I sit here and blame Satan for all of my pain
He will not win he will not harden my heart
As I try not to blame you please never let us part

Lord let my children know that I love them so
I never meant to blame you I just didn’t want them to go
Forgive me if I lose my way
Please let me get through another day
As I sit here and cry I still have to ask why
Why me lord why all this pain deep inside
I wish I could understand this today
So I will sit here and watch my only living son play

I will hold him close and let him know I love him so
And hope he never goes
Lead me on a path of purpose
Let my Keagans death not be invane
or I would surely go insane

Please let me find out why
So Keagans death does not go invane
I feel so much pain

I don’t understand this pain
I don’t understand why you had to go
I know I will see you again sweet child of mine
but still question why Lord why me, why did he have to go



Keagan was born on November  21, 2006.  The pregnancy pretty much went fine except for me going into labor off and on. But he was born healthy and happy and came home 24 hours after birth.

When he was about 6 months old he stopped gaining weight and he had very bad reflux.  In August of 2007 he had a nasal feeding tube placed because he started to lose weight. He was 9 months old at that time and was only 11lbs 8oz. They found out that his liver enzymes were high and so were his lactic acid levels.  A geneticist did some tests and found out that had 3-Methlglutaconic acid in his urine and diagnosed him with a Metabolic genetic disorder.

September 2007 he went back to the hospital for a fundoplication and a g-tube placement. During the surgery he mysteriously coded and they brought him back. Afterwards they discovered that he needed a blood transfusion. Other than that he was fine so we took him home. He then started to see his geneticist and we found out in November that he had a Mitochondrial defect. They were not able to tell us much about what problems he would have, or if they would ever be able to isolate the gene causing the problem. For a lot of what they were looking for there is either no testing, or the testing is so expensive that medical insurance does not cover it. We were warned that it could take several months to investigate and we could wind up with no answers at the end.

On January 9th, 2008 Keagan was doing fine. He sounded like he might be coming down with a cold, however he wasn’t running a fever or acting too different from normal. My husband came home and around 6:00pm he fed him and put him down to go to sleep. He woke up around 8:00 and was having problems breathing and his lips were blue. So I rushed him to the hospital, where they discovered that is blood sugar was 700. This is odd because in this type of disorder the blood sugar is usually low. They put him on a respirator, and that was the last time I saw my baby awake. His heart stopped when they were inserting the breathing tube. They were able to resuscitate him, however from that point on everything started to shut down and he passed away around 9:20 the next morning.

Through all of this Keagan was a happy baby. He loved sitting and playing with his blocks with his older brother Sebastian.  He was so laid back and calm, he smiled and laughed constantly. We miss him so much that words can not describe it.  The pain of losing him is unbearable. I know that he is in Heaven with his brother Christian and sister Destiny-Li, but I wish he was here in our  loving arms. I long to hear his laughter and see his smile. He is missed by all that knew and loved him.

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