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To The Memorial Pages Of
Kelly Swain Blades

Came to Earth~February 18, 1992
Returned to Heaven~October 1, 1993

Baby Kelly, 3 months old

Son of: Kelly O. Blades~Michelle Stafford Blades
Grandson of: Luther Eligh Blades~Lorraine Bridges Blades Donagriche
Arthur O. Stafford~Delores Swain Stafford
Brother of: Tyler, Trace, Austin, and Scarlett

"This is my Daddy and Mommy"

"This is 2 of my big brothers,
Trace and Tyler
and my little sister, Scarlett"
Spring of 2000

Krabbe Disease
(Globoid Cell Leukodystrophy)

Krabbe disease is a lethal, demyelinating condition caused by a deficiency of galactosylceramidase (GALC) enzyme activity. This leads to accumulation of cerebroside and psychosine. The most common from of Krabbe disease is the infantile form. These babies have mental and motor deterioration related to loss of myelin in the brain and peripheral nervous system. They usually die by two years of age. Less common are later onset forms of Krabbe disease that affect children and adults. It is likely that different mutations in the GALC gene cause this variability in onset and severity of symptoms. Sometimes differences may occur even among family members. Krabbe disease is inherited in an autosomal recessive pattern, two copies of non-working (GALC) genes must be present for symptons to occur. Researchers are currently trying to develop methods of treatment.

Infantile Krabbe Disease (90% of cases)
Symptoms usually start at three to six months of age. Development may be normal up to that time. An increase response to sensory stimuli (irritability), developmental delay or regression, difficulity in feeding, and seizures are common first symptoms. Children then have a more severe and rapid deterioration of mental and motor function. Hypertonia (increased muscle tone) and problems with vision develop. Eventually children lose mental and motor function, become deaf and blind, cannot move or speak, and typically must be fed through a tube. Death usually occurs within one year after symptoms appear.

"Mom's Story"

"On February 18, 1992, we were blessed with our youngest son, Kelly. I remember just after he was born the first thing I asked my husband was, "Does he have all his fingers and toes?" My husband, Kelly, looked down at me with a big smile and tears in his eyes and said, "He is perfect." Little did we know the journey our sweet baby boy faced.

The first few months our son did everything he was supposed to do. Held his head, smiled, laughed out loud, and cried. When he was about 3 1/2 months old he started crying a little more than usual. The doctor said he was fine. Just give him Tylenol. By the time Kelly was 4 1/2 months, my mom noticed he wasn't holding his head as well. He had also started stiffening his legs and arms.

When he cried out it sounded as if he was in pain. The doctor was still telling us, this was "normal" and called him a "lap baby" because we held him so much. The doctor said he was just spoiled. But my mom insisted we bring him to a child neurologist.

Kelly was around 5 months old when he was seen by the neurologist. He was diagnosed with celebral palsy. After a few weeks of therapy his legs and arms stiffening seemed to have gotten worse. He also had constant irritability.

When we returned back to the neurologist, she had gotten her final report from the therapist which confirmed what my husband and I had told her. At this point the neurologist started asking about family background. My husband and his parents could not think of any of the family members with any of these type symptoms. My mother brought up the fact that my daddy's brother and his wife had a baby girl, the youngest of 3 children. Her name was Melissa (Missy) Renee Stafford. She was born in April, 1975 and in 1976 at the age of 15 months she passed away. Baby Kelly's symptoms were almost the same as Missy's, as my mom recalled.

My mother said that Missy was diagnosed with Krabbe disease. Baby Kelly's neurologist said at least she had a starting point. She left the room and returned in about 20 minutes. She then sent for immediate testing for Krabbe Disease. Of course I just knew that was not what was wrong with my baby. After all, we had 3 healthy, beautiful children.

I can hardly recall the day I got the phone call. I remember answering the phone and when Kelly's doctor identified herself, I felt my heart stop beating as I detected something in her voice. All I can remember hearing was, "I'm sorry, Kelly's test was positive." I felt the phone as it fell from my hand and I must have screamed because it seemed in slow motion as my husband ran and took me outside for air.

Kelly had a very long and hard journey as he survived the next 13 1/2 months with high fever, stiffening with pain, seizures, and having to wear an oxygen mask all of the time. Baby Kelly had wonderful doctors that tried very hard to help him. At that time they knew very little about Krabbe Disease. They gave him Tylenol for fever along with seizure medication. They even gave him Ativan for the pain.

For about a year we didn't go very many places, for he seemed to be more comfortable at home with Mommy and Daddy holding him. We contacted a genetic specialist starting with Tulane Hospital in New Orleans, Louisiana, all the way to the Mayo Clinic. We found no one knew much regarding this disease, coming to an end each time.

Kelly fought a long and hard battle with the love of his daddy, mommy, brothers, grandparents, aunts, uncles, and cousins by his side. On the night of September 30, 1993, as my husband and I cradled him in the middle of us, we kissed him to sleep. His oxygen was on his little face, I put his little hand in mine and prayed that God would heal him, as I did every night. On that night as my husband lay close to him asleep, I remember a mist that filled the room and it felt as if this was someone on each side of our bed. There was such a wonderful presence in that room, words cannot explain! I don't remember when I fell asleep, I just knew that God's holy presence was there and he was holding my beautiful baby boy in his arms.

There are many of us who have lost our children. They may be gone but their memories live on in our hearts and minds. We never forget them as each birthday passes or in every child that walks by who's face is about the same age as their's would be.

The one thing that I have found comfort in, is knowing that our Heavenly Father is holding his perfect body until the day when I can hold him in my arms again."

Michelle Blades
Kelly's Mom Forever
March 15, 2000

Jesus Has a Rocking Chair

Jesus has a rocking chair.
And he holds your precious baby
with tender loving care.

He takes the place of mom and dad.
He's the greatest parent a child could have.

Don't worry about your baby there.
Jesus has a rocking chair.

"Great-grandma and Me"
Her name is Violet Sibley Swain

"At home in Walker, Louisiana"

Safely Home

I am home in Heaven, dear ones;
Oh, so happy and so bright!
There is perfect joy and beauty
In this everlasting light.

All the pain and grief is over,
Every restless tossing passed;
I am now at peace forever,
Safely home in Heaven at last.

Did you wonder I so calmly
Trod the valley of the shade?
Oh! but Jesus' love illumined
Every dark and fearful glade.

And He came Himself to meet me
In the way so hard to tread;
And with Jesus' arm to lean on,
Could I have one doubt or dread?

Then you must not grieve so sorely,
For I love you dearly still:
Try to look beyond earth's shadows,
Pray to trust our Father's Will.

There is work still waiting for you,
So you must not idly stand;
Do it now, while life remaineth-
You shall rest in Jesus' land.

When that work is all completed,
He will gently call you Home;
Oh, the rapture of that meeting,
Oh, the joy to see you come!

"Everybody says I look just like my daddy.
What do you think?"

"Daddy and Me"

"Lunch with Mommy"

"Dinner with Daddy"

"Next to Kelly's Page 2"

"A Tribute to Shelley"
(A memorial website for Kelly's cousin, Shelley Beasley)

Please Sign Our Guestbook
Your Thoughts Would be Appreciated

Alternate Guestbook

"Kelly's E-Mail"

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God's Nursery in Heaven
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Music Selection: "I will Always Love You" by Whitney Houston
copyright 2000 Kelly & Michelle Blades
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