Friday, May 28, 2010

May 28, 2010

I am submitting this article to local papers today.

Fundraiser supports testing, disease treatable
By Camara Cassin

Baby Anaya Cassin-Potts, first written about in March, has now been given a diagnosis of Infantile Krabbe Leukodystrophy. This rare disease causes demylination in the brain due to lack of a specific enzyme required to metabolize fats. It can strike families with no medical history of any neurological problems. Two healthy parents who both carry a recessive gene for this enzyme deficiency can produce a perfectly healthy looking newborn, who, at the age of three or four months, will begin showing symptoms of Krabbe Leukodystrophy.
The outlook for kids with Krabbe is bleak. In most cases a baby diagnosed with infantile Krabbe will develop normally for a few months and then lose their motor skills, the ability to hold their heads up, the ability to smile, laugh or speak, followed by loss of sight and hearing. Seizures may or may not occur and life expectancy is less than 2 years.
The saddest part about this disease is that once symptoms are present it is untreatable. Krabbe can be tested for at birth and treated with an umbilical cord blood transfusion that contains the healthy stem cells of another baby. These stem cells make their way to the brain and produce the enzyme that is required. Children who receive this treatment continue to develop and have a much higher quality of life and a longer life expectancy.
British Columbia does not test babies for Krabbe Leukodystrophy at birth. In some states in the USA testing for Krabbe is routine. Anaya’s parents are working to put together a fund for Nelson parents at the Kootenay Lake Hospital who would like to have their newborn screened for this disease with a simple heel poke. Each test must be sent to a special lab and paid for independently. To accomplish this they are holding a Gala Dinner and Dance Fundraiser at the Prestige Inn on June 11, 2010. Proceeds will also go to the Hunters Hope Foundation which conducts research, and to the family to help with expenses. Tickets are available at the Prestige or by calling 250-505-0275.



  1. does this mean, that parents can donate cord blood to help?

  2. It makes me so sad that this disease is easy to diagnose and treat, but yet they are not doing it as a rountine test. I had no idea about the disease until I met you and I am sure most people don't know about it. I am so glad that you are doing all of this work to make people aware so other parents don't have to suffer the way you are.

  3. Hi Lilli,
    Sadly Anaya is too far along to receive treatment. I believe you can donate cord blood or keep it at a cord blood bank. I would look online to see where you could donate to.


  4. While it would be great to donate cord blood, please let all babies keep their own, i believe it may prevent later illness if all is well.


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