One Rare Tot: Kennedy A. Creal
Donation protected
Thanks for checking out our campaign! This is my little cousin Kennedy Creal who is now 2 years old! Her Mom, is a wife and mother of 3 college graduate that had resign from teaching to care for this precious Angel.
Unfortunately her family was unprepared for all the obstacles she would face with Kennedy. I post this and asking anyone to bless to this young family and donate whatever amount your heart desires!!! Please share....
BELOW IS HER MOM’s STORY...
It’s her 2nd Birthday (8/1/16)
She’s the one who taught me how to slow down and take it all in. She’s the one who taught me that life is about bringing her happiness and not dwelling on her helplessness. She is Kennedy Alexandria Creal and today is her SECOND BIRTHDAY! I’ve gone back and forth on writing about our life and decided that her story, our story is also our testimony. So here it is......
Towards the end of December 2016, 4 months after her birth she changed. Her smile faded, laughter silenced, and cooing grew quieter while her body started jerking and she whimpered. That was the beginning.
January 2017, at 5 months and 3 days old after a 24 hr EEG in the Epilepsy Monitoring Unit at Cook Childrens and a sedated MRI she was diagnosed. The National Organization of Rare Disorders(NORD) characterizes it as a rare heterogeneous conditions characterized by prenatal development of an abnormally small cerebellum and brain stem(it’s shaped like a dragonfly), which is usually associated with profound psychomotor retardation, known as Pontocerebellar Hypoplasia or PCH with a life expectancy of up to 25 years old.In short, she has an Intellectual Disability Disorder and yes it’s extremely rare. The jerking she was exhibiting was a severe form of epilepsy, known as West Syndrome(also rare), and her cute little head, is Microcephaly.
I fell apart, we all fell apart, this beautiful baby was now an extremely unique baby who needed me, needed us. She needed all of us to put ourselves back together and fight. She started a 7-week steroid drug regime to control the seizures and became my chubby happy baby. At her initial diagnosis we were told it was genetically passed down and there were about 6-10 types of PCH. To determine which type she needed genetic testing(very expensive) from both parents and child and the results would take months to get back. As spring approached she and I spent alone time together, learning and loving on each other; her siblings became the best helpers and her dad gave snuggles. Time passed and we finally had the genetics appointment and we went in hoping to gain some understanding and additional information. Yeah that didn’t happen. Although it was genetically confirmed she had PCH, testing stated she didn’t have any of the types listed. Our little one was our Rare Tot!
Into summer, we continued on with our new normal but in life there are many trials and as she approached her first birthday her spasms were slowly returning. After the sweet moments of her birthday, a few days later she was admitted to the EMU for another 23 hr. EEG to confirm what we already knew, her spasms were back. Yep more drugs but this time she became my tall Rare Tot.
Fall was a season beauty, not only for the weather but also a healthy time for Kennedy. As we slid into winter her screeching and laughter hushed and she began eating less and less. At the beginning of 2018 aka continuance of flippen flu season, viral infections took over and lingered for weeks at a time only to go away and return in addition to her eating less. I spent 15 of out 24 hours in a cycle of just trying to get something in her stomach and sleeping became a lot harder.
We spent February back and forth in the ER for either viral infections or chronic constipation, March was several appointments and calls pushing for a remedy for my sick hungry child. Spending Easter weekend with my loving family and a miserable baby finally broke me and we went back to the ER. After a break down with several nurses (I love nurses) and a plea to a doctor we were admitted. She was diagnosed with dehydration, chronic constipation, and severe malnutrition/failure to thrive. The hours I spent trying to get anything in stomach was the only thing keeping her alive and I didn’t realize it until I was told.
While admitted, she had surgery to get a gbutton (gastric button for feeding) placed for feeding. In that time we learned the hard way she gets very ill coming out of anesthesia. We were in the hospital for 11 days and left again another kind of new normal. She was now a bubbly, laughing, hearty (homegirl gained some lbs. y’all) Rare Tot!
If you’re thinking that sounds real depressing, yep it was. That new normal I mentioned, well it included depression, blaming myself for what was “wrong” with her and lot of crying to God, my husband, family, and friends. I went from a certified Special/Deaf and Hard of Hearing Education Teacher and Speech Therapist Assistant who consoled parent’s with a two-person income household to only my husband’s income and on the other side as a shell of a parent working with a child with special needs. Finances were tight and nothing seemed promising except for living in guilt. I was broken for a very long time and choose not to acknowledge the depression, ignoring my own health issues and the weight I gained. Over time as I listened more to the silence when I felt like I had no one to talk to, God literally told me to slow down and look at your child. Those beautiful brown eyes assured me that God makes no mistakes and she warmed my broken soul. I had to be her mom and also have my husband acknowledge his feelings out loud. We had some healing to do and we’re constantly working on it.
Summer is here and it’s August 1st and that was only a small portion of this little girl’s life. She still has more living to! As for me I’m working on slowing down and taking life in!
To all people out there raising a child with special needs, I see you, I’m here, and I understand. To the family and friends that hold us up, we love you and we’re thankful.
Happy 2nd Birthday Kennedy!
*I apologize for any errors; I cried a few times editing this.
Unfortunately her family was unprepared for all the obstacles she would face with Kennedy. I post this and asking anyone to bless to this young family and donate whatever amount your heart desires!!! Please share....
BELOW IS HER MOM’s STORY...
It’s her 2nd Birthday (8/1/16)
She’s the one who taught me how to slow down and take it all in. She’s the one who taught me that life is about bringing her happiness and not dwelling on her helplessness. She is Kennedy Alexandria Creal and today is her SECOND BIRTHDAY! I’ve gone back and forth on writing about our life and decided that her story, our story is also our testimony. So here it is......
Towards the end of December 2016, 4 months after her birth she changed. Her smile faded, laughter silenced, and cooing grew quieter while her body started jerking and she whimpered. That was the beginning.
January 2017, at 5 months and 3 days old after a 24 hr EEG in the Epilepsy Monitoring Unit at Cook Childrens and a sedated MRI she was diagnosed. The National Organization of Rare Disorders(NORD) characterizes it as a rare heterogeneous conditions characterized by prenatal development of an abnormally small cerebellum and brain stem(it’s shaped like a dragonfly), which is usually associated with profound psychomotor retardation, known as Pontocerebellar Hypoplasia or PCH with a life expectancy of up to 25 years old.In short, she has an Intellectual Disability Disorder and yes it’s extremely rare. The jerking she was exhibiting was a severe form of epilepsy, known as West Syndrome(also rare), and her cute little head, is Microcephaly.
I fell apart, we all fell apart, this beautiful baby was now an extremely unique baby who needed me, needed us. She needed all of us to put ourselves back together and fight. She started a 7-week steroid drug regime to control the seizures and became my chubby happy baby. At her initial diagnosis we were told it was genetically passed down and there were about 6-10 types of PCH. To determine which type she needed genetic testing(very expensive) from both parents and child and the results would take months to get back. As spring approached she and I spent alone time together, learning and loving on each other; her siblings became the best helpers and her dad gave snuggles. Time passed and we finally had the genetics appointment and we went in hoping to gain some understanding and additional information. Yeah that didn’t happen. Although it was genetically confirmed she had PCH, testing stated she didn’t have any of the types listed. Our little one was our Rare Tot!
Into summer, we continued on with our new normal but in life there are many trials and as she approached her first birthday her spasms were slowly returning. After the sweet moments of her birthday, a few days later she was admitted to the EMU for another 23 hr. EEG to confirm what we already knew, her spasms were back. Yep more drugs but this time she became my tall Rare Tot.
Fall was a season beauty, not only for the weather but also a healthy time for Kennedy. As we slid into winter her screeching and laughter hushed and she began eating less and less. At the beginning of 2018 aka continuance of flippen flu season, viral infections took over and lingered for weeks at a time only to go away and return in addition to her eating less. I spent 15 of out 24 hours in a cycle of just trying to get something in her stomach and sleeping became a lot harder.
We spent February back and forth in the ER for either viral infections or chronic constipation, March was several appointments and calls pushing for a remedy for my sick hungry child. Spending Easter weekend with my loving family and a miserable baby finally broke me and we went back to the ER. After a break down with several nurses (I love nurses) and a plea to a doctor we were admitted. She was diagnosed with dehydration, chronic constipation, and severe malnutrition/failure to thrive. The hours I spent trying to get anything in stomach was the only thing keeping her alive and I didn’t realize it until I was told.
While admitted, she had surgery to get a gbutton (gastric button for feeding) placed for feeding. In that time we learned the hard way she gets very ill coming out of anesthesia. We were in the hospital for 11 days and left again another kind of new normal. She was now a bubbly, laughing, hearty (homegirl gained some lbs. y’all) Rare Tot!
If you’re thinking that sounds real depressing, yep it was. That new normal I mentioned, well it included depression, blaming myself for what was “wrong” with her and lot of crying to God, my husband, family, and friends. I went from a certified Special/Deaf and Hard of Hearing Education Teacher and Speech Therapist Assistant who consoled parent’s with a two-person income household to only my husband’s income and on the other side as a shell of a parent working with a child with special needs. Finances were tight and nothing seemed promising except for living in guilt. I was broken for a very long time and choose not to acknowledge the depression, ignoring my own health issues and the weight I gained. Over time as I listened more to the silence when I felt like I had no one to talk to, God literally told me to slow down and look at your child. Those beautiful brown eyes assured me that God makes no mistakes and she warmed my broken soul. I had to be her mom and also have my husband acknowledge his feelings out loud. We had some healing to do and we’re constantly working on it.
Summer is here and it’s August 1st and that was only a small portion of this little girl’s life. She still has more living to! As for me I’m working on slowing down and taking life in!
To all people out there raising a child with special needs, I see you, I’m here, and I understand. To the family and friends that hold us up, we love you and we’re thankful.
Happy 2nd Birthday Kennedy!
*I apologize for any errors; I cried a few times editing this.
Organizer and beneficiary
Jazzay Too
Organizer
Mansfield, TX
Jasmin Creal
Beneficiary
