Help the Basaraba boys on their FA journey.

THIS FAMILY NEEDS OUR HELP

The Basaraba family have 2 of their 3 children diagnosed with a progressive neurological condition called Friedreich's Ataxia (FA).  FA is a debilitating, life-shortening, degenerative neuromuscular inherited disorder that causes progressive damage to the nervous system. 

There is no treatment or cure for Friedreich's ataxia.

Mikail, 17 years old was diagnosed in November, 2016 and Emerson, 14 years old was diagnosed in May, 2018.

This is a very rare genetic condition that worsens over time.  In order for someone to have FA, both parents have to carry the FXN gene deformity, and it's only a 25% chance for their children to have FA.

Signs and Symptoms of FA:
·         Loss of coordination (ataxia) in the arms and legs
·         Decreasing pulmonary function
·         Fatigue
·         Energy deprivation and muscle loss
·         Vision impairment
·         Hearing loss
·         Slurred speech
·         Involuntary eye movements
·         Foot deformities and loss of feeling in feet and legs
·         Aggressive scoliosis (curvature of the spine)
·         Diabetes mellitus (insulin dependent, in most cases)
·         Serious heart conditions, including hypertrophic cardiomyopathy and arrhythmias
·         Shortened life span

Mikail’s current health status:
·         Uses a wheelchair full time, requires help with most activities of daily living
·         Hypertrophic cardiomyopathy (heart muscle becomes abnormally thick which makes it harder for the heart to pump blood
·         Obstructive sleep apnea
·         Scoliosis (will require surgery in the near future)
·         Medical depression from his FA worsening and losing his independency
·         Significant nerve pain, affecting his entire body
·         Has a feeding tube running 9 hours daily which helps bring nutrition directly to the stomach

Emerson’s current health status:
·         Struggles to be on his legs for long periods of time so requires the use of his wheelchair
·         Intense nerve pain that can be debilitating for him to move
·         Scoliosis (will require surgery in the near future)
·         Heart starting to show changes
·         Suffers mentally from his own continued deterioration with FA and watching Mikail’s ongoing deterioration.

Mikail and Emerson continue to have a collection of ongoing tests done which include more complex neurological tests, CT scans, MRI’s, ECG’s Echocardiograms, blood tests, and muscle strength which are performed at the Alberta Children’s Hospital. 

They are currently renting a 3 bedroom bungalow which is not accessible.

Challenges they are currently facing:
·         There is no ramp so Mikail has to be carried to and from the house
·         The wheelchair does not fit in the bathroom and very challenging to get through the doorways
·         Mikail also has a motorized wheelchair which cannot navigate in their house
·         Medical equipment needed as the boys continually progress with their FA.

     They just received notification that the landlord is selling the home, so the family needs to find accessible home by July 1, 2021.

What’s needed:
·         Accessible home
·         Accessible vehicle
·         Financial help with ongoing therapies, accessible equipment and medication costs required to manage their FA symptoms (not all medications are covered by their insurance plan)