26711 Aliso Creek Road # 200B, Aliso Viejo, CA 92656 pcdeficiency@gmail.com (949) 280-1455
Kiana
My Story,
My name is Kiana Rose. I was sent to my parents as a Christmas gift in 2013.
At first, life was great and everything looked fine. But after a few months, I started to have seizures and little by little other signs came to the surface. After several blood tests, MRI, EEG and hospitalizations, I was diagnosed with Pyruvate Carboxylase Deficiency, PC Deficiency.
PC Deficiency is a degenerative mitochondrial disorder.
Basically the batteries of my body do not produce enough energy, which causes damage to my brain and organs. I have low muscle tone and can not sit or walk yet, but I am working very hard at it with the help of my therapists. I do not talk but try to communicate by gazing, touching, pointing and if they don’t get it I kick, which always works very well!
Even though the prognosis is not the best, I am hoping for the best! That’s why I am a very happy baby and I know how to melt people’s hearts with my beautiful smile and mesmerizing black eyes.
My parents and I are determined to help to find a cure and make sure no other family has to go through this heart breaking battle by raising awareness and funds for medical research. The genetic experiments are very promising but require a lot of funds to become an actual treatment approved by the FDA. The mitochondrial disorder is also known to be the contributing factor and maybe the cause of other diseases like some spectrum of Autism, Parkinson disease, Multiple Sclerosis and many more.
I would like to thank you, in advance, for your generous contribution and support.
Live, love and give forward!
Please help me to live a HAPPY, LONG LIFE and also take part in finding a cure and save children’s lives.
Kiana
My Story,
My name is Kiana Rose. I was sent to my parents as a Christmas gift in 2013.
At first, life was great and everything looked fine. But after a few months, I started to have seizures and little by little other signs came to the surface. After several blood tests, MRI, EEG and hospitalizations, I was diagnosed with Pyruvate Carboxylase Deficiency, PC Deficiency.
PC Deficiency is a degenerative mitochondrial disorder.
Basically the batteries of my body do not produce enough energy, which causes damage to my brain and organs. I have low muscle tone and can not sit or walk yet, but I am working very hard at it with the help of my therapists. I do not talk but try to communicate by gazing, touching, pointing and if they don’t get it I kick, which always works very well!
Even though the prognosis is not the best, I am hoping for the best! That’s why I am a very happy baby and I know how to melt people’s hearts with my beautiful smile and mesmerizing black eyes.
My parents and I are determined to help to find a cure and make sure no other family has to go through this heart breaking battle by raising awareness and funds for medical research. The genetic experiments are very promising but require a lot of funds to become an actual treatment approved by the FDA. The mitochondrial disorder is also known to be the contributing factor and maybe the cause of other diseases like some spectrum of Autism, Parkinson disease, Multiple Sclerosis and many more.
I would like to thank you, in advance, for your generous contribution and support.
Live, love and give forward!
Please help me to live a HAPPY, LONG LIFE and also take part in finding a cure and save children’s lives.
Kiana