Tina’s Story


Our world started falling apart when my baby Tina was only two and a half years old. We were on holidays when she went into a coma. Then seizures started, and so did our endless trips to Temple Street Hospital. Tina’s balance was poor, and she was exhausted all the time. As her mother, I knew something was seriously wrong, but I was told she was fine.

Last March, Tina was diagnosed with a rare condition called Alper’s Disease. 

There is no cure, but, with your help, there is hope:

Help us get Tina to Colorado before her condition gets even worse. There she can receive medical cannabis to help stop the seizures and give her more time with us, her devastated and helpless family.

Thanks to everyone who has contributed and liked and shared the Facebook page. You are helping every child who might benefit from this treatment.


WHAT IS ALPER’S DISEASE?

Alper’s Disease is a progressive neurological disorder that starts in childhood and is often complicated by serious liver disease. Symptoms include increased muscle tone with exaggerated reflexes, seizures, and loss of cognitive ability (dementia).

The first symptoms of Alper’s disease are usually seizures at any age between 3 months and 5 years. Sufferers endure poor coordination of motor movement, partial paralysis, seizures, and muscle twitching. The child cannot attain normal muscle tone (hypotonia), but their limbs seem stiff.

Here are other symptoms of Alper’s disease:

  • Progressive and often severe mental retardation
  • A loss of intellectual function (thinking, remembering, and reasoning) that can result in dementia
  • Loss of control of the movement of arms and legs (spastic quadriplegia)in later stages,The liver may fail completely, and sufferers can go blind.
  • Liver failure
  • Blindness

This is what is in store for Tina if she does not get help.

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