Cystinosis is a rare Orphan Metabolic Disease. There is no cure.
It afflicts only 75 children and young adults in Canada and just 2000 worldwide. The disease slowly damages organs including the kidneys, liver, thyroid gland, eyes, muscles and brain. Because it affects such a small population, research money is almost non-existent.
The Liv-A-Little Foundation is committed to supporting the advancement of treatments and ultimately a cure for cystinosis by educating, promoting and funding progress.
Closer to a Cure Every Day
Partnering With Cystinosis Research Foundation
Meet Olivia
Olivia Ann Mae Little was born a healthy 7lbs.14oz and measured 20 ½ inches long. Olivia did everything “normal” babies do; she smiled, laughed, rolled over, babbled and played.
However, that soon changed around 6 months when she found a love for water and hated food. Olivia had zero interest in food and this soon became a daily battle. The doctors kept encouraging her parents to keep trying new foods, to keep the environment calm and to limit her water intake. By nine months, Olivia’s mom Erin knew something was not right.
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What is Cystinosis?
It's Complicated
A Rare, Inherited Disease
Cystinosis is a disease characterized by the abnormal accumulation of the amino acid cystine.
Diagnosis
Without specific treatment, children with the disease can progress to end-stage renal failure by an average age of nine.
Symptoms
Patients can develop hypothyroidism, severe muscle weakness and central nervous system complications.
Effects
Cystine damages various organs inlcuding the kidneys, liver, muscles, white blood cells, eyes and central nervous system.
Treatment
The only specific treatment for cystinosis is cysteamine.
Outlook
We've partnered by with the Cystinosis Research Foundation to help find a cure.
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Contact Info
Phone
Address
519-832-5188
5244 Bruce Road 3, Port Elgin, Ontario, Canada N0H 2C6
