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Click ''donate" to make an online contribution to Rett Syndrome research in honor of Xayia!
Xayia came into the world at 26 weeks gestation. She remained in intensive care
three months. What a little fighter! She was on the vent most of the time along with
contracting pneumonia and sepsis, finally able to come home with her parents.
After a lot of struggling during her early years with her parents; Xayia came to live
with us(fraternal grand-father and step-grandmother) on March 27th, 2008.
God works in mysterious ways. I had underwent a hysterectomy and was off of work
for two and a half weeks when Xay was brought to us. Jon and I worked non-stop with
her during that time. She started sitting up better and army crawling better, along with
an improvement with her speech. Over the next six months she had all her preemie
follow-up appointments she had needed. We saw her cardiologist, neurologist and
eye specialist. We underwent a muscle and nerve biopsy which came back negative.
Xayia was learning to play, going to early intervention and all of her therapies. I have
her on basically an organic diet which has helped her thrive. However, in the back of
my mind I knew there was something else wrong. I just couldn't put my finger on it.
Xay was still improving and she started calling me Me-me. We then developed
seizures in July of 2008. The neurologist said that she is doing fine ,just keep doing
what you are doing and gave her meds for the seizures. I scoured the internet to find
something to explain why she was not improving any faster from "just being preemie."
In September of 2008 Me-me and Pap-pap became the permanent guardians of
Xayia Mae Moorehead with all the worries and fears of what lies ahead coming along
with it.
By January of 2009 we became frustrated with our physicians and decided to start
fresh. We found a wonderful pediatrician in Zanesville, Ohio who has a special needs
nurse to help with all the needs of our kids. They sent us to a new neuroloigist and a
genetics specialist and on April 3rd,2009 Xayia was diagnosed with Rett Syndrome
MecP3_168.
Since then our beautiful little girl has lost most of her speech(but can still say Me-me)
and has lost most of her hand control. She will take steps sometimes.
Xayia loves the beach and loves to ride her bike. She listens to music and loves Dora
and The Wonder Pets. She will start pre-school in the fall and special needs dance
class on Sundays.
She has recently started taking more steps and smiles and laughs all the time. We
are hoping for more small improvements one day at a time.
Thanks for visiting us in the land of Xayia!
three months. What a little fighter! She was on the vent most of the time along with
contracting pneumonia and sepsis, finally able to come home with her parents.
After a lot of struggling during her early years with her parents; Xayia came to live
with us(fraternal grand-father and step-grandmother) on March 27th, 2008.
God works in mysterious ways. I had underwent a hysterectomy and was off of work
for two and a half weeks when Xay was brought to us. Jon and I worked non-stop with
her during that time. She started sitting up better and army crawling better, along with
an improvement with her speech. Over the next six months she had all her preemie
follow-up appointments she had needed. We saw her cardiologist, neurologist and
eye specialist. We underwent a muscle and nerve biopsy which came back negative.
Xayia was learning to play, going to early intervention and all of her therapies. I have
her on basically an organic diet which has helped her thrive. However, in the back of
my mind I knew there was something else wrong. I just couldn't put my finger on it.
Xay was still improving and she started calling me Me-me. We then developed
seizures in July of 2008. The neurologist said that she is doing fine ,just keep doing
what you are doing and gave her meds for the seizures. I scoured the internet to find
something to explain why she was not improving any faster from "just being preemie."
In September of 2008 Me-me and Pap-pap became the permanent guardians of
Xayia Mae Moorehead with all the worries and fears of what lies ahead coming along
with it.
By January of 2009 we became frustrated with our physicians and decided to start
fresh. We found a wonderful pediatrician in Zanesville, Ohio who has a special needs
nurse to help with all the needs of our kids. They sent us to a new neuroloigist and a
genetics specialist and on April 3rd,2009 Xayia was diagnosed with Rett Syndrome
MecP3_168.
Since then our beautiful little girl has lost most of her speech(but can still say Me-me)
and has lost most of her hand control. She will take steps sometimes.
Xayia loves the beach and loves to ride her bike. She listens to music and loves Dora
and The Wonder Pets. She will start pre-school in the fall and special needs dance
class on Sundays.
She has recently started taking more steps and smiles and laughs all the time. We
are hoping for more small improvements one day at a time.
Thanks for visiting us in the land of Xayia!
A special thanks to our donors:
Joanne Sobel
Garden of Hope Sites:
Kennedy's Bakery, The Point,
Theo's Restaurant, and Print Plus
Joanne Sobel
Garden of Hope Sites:
Kennedy's Bakery, The Point,
Theo's Restaurant, and Print Plus