Miles for Menkes Disease
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Miles Owen "Rampage" Taylor

By:  Daddy (Jonathan Taylor)
  My son is Miles a 4 year old who was diagnosed with a rare disease called Menkes.  This disease incidence is 1 in 50,000 to 100,000 live births in the United States, which means there are fewer than 100 cases a year in this country.  Most children pass away in the first 3 years of life.  Miles has been told by doctors he only had days to live 3 times, but proved them wrong each time!  He is currently on his longest streak without being hospitalized!!
  The reason for our page is to spread awareness of the disease.  If diagnosed and treated within the first 10 days of life, the child with Menkes disease has a much better prognosis.  The problem is most symptoms don't become noticeable until 2 to 4 months of life.  Some symptoms can be noticed earlier, but mimic medical problems that many newborn babies encounter.  Unfortunately, most health care practitioners have not heard of Menkes disease and don't know what to look for.
  Miles had a low birth weight and was back in the hospital on his 3rd day of life with low body temperature and low heart rate.  Hypothermia happens to be a symptom of Menkes.  The Doctor's said his low weight caused the low temp.  He was discharged only to be back at the same hospital month’s later suffering from seizures as frequent as every 2 minutes.  The Children's Hospital of Denver is a world renowned institute with great health care professionals.  They are not to blame for his early misdiagnosis, poor education on the disease worldwide is. 
  During his 23 day stay in the hospital, he received exceptional treatment from some of the smartest individuals in neurology, pediatrics & Metabolics.  Unfortunately, at 4 months of age the disease has taken hold and only symptoms can be treated.  Beth, his mother & my wife, and I have accepted Miles condition and have to come to terms with the fact that Menkes ultimately will more than likely be responsible for our son’s death way before he should go.  Pending a cure!
  With your help and the help of others, spreading awareness may lead to less cases each year making it past the critical 10 day mark, as well as more donations for Menkes awareness and research. The President of The United States of America recently asked to meet Miles and visited this very website!!

Please read and sign Miles petition at:
http://signon.org/sign/president-obama-make-4

Symptoms:

  • Pudgy, rosy cheeks
  • Lack of muscle tone, floppiness (hypotonia)
  • Irritability
  • Seizures
  • Brittle, kinky hair
  • Feeding difficulties
  • Low body temperature
  • Bone spurs
  • Skeletal changes
  • Mental deterioration
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