Reach out to other patients

Sharing the experience and emotion of coping with neuroacanthocytosis brings insights, understanding and strength to the whole community of affected families.

Written by RareConnect team, published about 1 year ago.

Reach out to other patients

Ann Lippincott, mother of the late Marika Ann Critelli who died in November 2009, showed this in the insightful and beautiful poem which she wrote shortly after Marika was diagnosed with chorea-acanthocytosis.

Marika Ann Critelli, Santa Barbara, 1995.

You wake up each morning
Remembering the name of the diagnosis,
Vowing not to let it define your day
Despite the immediate reminders
As you attempt to walk to the bathroom
On legs that will not obey.

You begin each day
Remembering the name of the diagnosis,
Vowing not to let it define who you are
Despite the immediate reminders
As you attempt to swallow your oatmeal
With a tongue that will not obey.

You go out into the world
Remembering the name of the diagnosis
Vowing not to let it impact your interactions with others
Despite the immediate reminders
As you attempt to engage in conversation
With words that will not come.

You promise not to let the name of the diagnosis
Define who you are,
Despite the missing first line
Of a poem that will not forget.

~ Ann Lippincott
March 14, 2009

Anne’s poem and a memorial to Marika was shared with the NA community in NANews, ,our regular e-newsletter. We are eager to publish patients own comments, stories, photos, paintings and other material from patients and their families.

Please contact Ginger Irvine: ginger@naadvocacy.org

Written by RareConnect team, published about 1 year ago.

No comment for «Reach out to other patients»

Expand all ]

No comment yet.

Leave a comment

You must be registered and signed in to leave a comment. Sign in now.