Hi my name is Elizabeth.

I am a single mother of "Jacob Aurora" Who lives with a rare genetic disorder Pura Syndrome.

There are only two children in manitoba, living with this rare genetic condition.

We currently reside just 40 minutes outside of winnipeg.

We've had some complications with our vehicle.

And with out our vehicle, we are unable to commute back and forth.

From Hanover area near Steinbach to Winnipeg Children's Hospital. Sky Centre, Speech Therapy.

And and specialized child care, to help miss Jacob aurora with her mobility and her sensory.

JacobAurora, it's followed by a quantity of specialists in Winnipeg, manitoba.

As follows, Genetics, Feeding, Nurology, occupational therapy, physiotherapy, speech.

Hip surveillance, at the sky center, along with equipment.

Medical Condition (PURA SYNDROME)

Jacob's Aurora, She was born with a rare genetic disorder known as PURA. Only a little over 300 children worldwide have PURA. Jacob Aurora has low muscle tone and needs several days of therapy and special education. Unfortunately Jacob doesn’t receive any support funding from the government at this time.

Jacob has developmental delay, severe hypotonia, non verbal, feeding difficulties.. and is functioning at a level of a18 month old level. PURA syndrome is a condition characterized by intellectual disability and delayed development of speech and motor skills, such as walking. Expressive language skills (vocabulary and the production of speech) are generally more severely affected than receptive language skills (the ability to understand speech), and most affected individuals are unable to speak. People with PURA syndrome may learn to walk later than their peers; many are never able to walk. In infancy, affected infants have very weak muscle tone (hypotonia) and feeding difficulties. Problems with swallowing (dysphagia) can last throughout life. In addition, affected infants can be excessively sleepy (hypersomnolent), have a low body temperature (hypothermia), and have short pauses in breathing (apnea) or episodes of abnormally slow breathing (hypoventilation). These breathing problems usually go away after age 1.

Recurrent seizures (epilepsy) are also common in PURA syndrome. Seizures usually begin before age 5 with uncontrolled muscle jerks (myoclonus). Other types of seizures can develop, such as generalized tonic-clonic seizures, which involve loss of consciousness, muscle rigidity, and convulsions. In people with PURA syndrome, seizures are often difficult to control.

Other features in people with PURA syndrome can include abnormalities of the heart, eyes, urogenital tract, gastrointestinal tract, and skeleton.low levels of vitamin D

She has high risk of developing dysplasia and scoliosis in the future.

We are trying to raise money for her as she would benefit from conductive education therapy. Please help support Jacob Aurora. Thank you