Tim Hayes -- in memoriam
We're very sorry to report the death in February 2011 of Tim Hayes, 53,
who along with wife Laurie kept in regular touch with the Advocacy. Tim
lived in Minnesota and became a police officer after school; his
symptoms started in 1986 and he tried to keep in touch with other
patients and their families on-line in the early days of the internet.
He often described in humorous terms how his symptoms had changed and
how he overcame some of the frustrations of living with NA.
Tim inspired us all with his courage and determination not to give up.
He was a very persistent patient, calling for the advocacy community to
do something; he never failed to point out how dreadfully
neuroacanthocytosis affects a person's life. Tim kept reminding us all
how important it is to remain positive and resist helplessness. Laurie
describes Tim as someone who was loving, interested in everything, and
above all tenacious. "You had every reason in the world to give up, but
you never did," For Tim's memorial, Laurie wrote in a letter to her
husband, "You took the hand life dealt you and made it a full, proud,
amazing life. We will forever remember your smile, your thumbs-up, your
love of life."
|Maria Isabel Aparisi, on the left|
Maria Isabel Aparisi -- in memoriam
From near Valencia, "Mabel" passed
away aged 33 at the beginning of April 2011. She was put in touch with Spanish patient in Madrid, Ana and family, and they met on holiday in
Valencia. Ezequiel, Ana's husband, reports that they recognised a
pleasant and happy woman. She was always smiling and always had
something to report.
They all visited the Oceanographic Science Museum
(pictured) and Mabel would run from one place to another. When Ezequiel
asked her why she ran instead of walking, she simply said that she ran
better than she walked; other patients have also reported this scenario.
Denise Ball -- in memoriam
Denise, sister of Peter, passed away in
November of 2009, aged 58. She was the light in many people's lives, not
only because her eyes sparkled but also her heart was caring and
generous. Denise's family extolled the life of Denise who lived with NA
for over 20 years after being diagnosed in the late 1980s.
|Denise Ball with Charlie Stephens|
Denise was born in Whitehaven, Cumbria, the elder sister of Jacqueline
and Peter. John and June and the family lived in Stockton for many
years. During the school years Denise studied history and economics and
visited forts, castles and Holy Island. She obtained a teacher's degree
in Newcastle and taught at a British military school in Germany before
working with Laker Airlines at Gatwick Airport. In the early 1980's she
moved back to Stockton and met her partner and soulmate of 27 years,
Charlie Stephens. Through her years in care homes, Denise continued to
enjoy her music, shopping (she was a fashion devotee)and visits to the
pub with her carers.
Denise had a sense of fun and was good humoured; she had strength and
tenderness and often rose above the frustrations of her symptoms and
just settled with a smile. She was passionate about contributing to
research into NA and adamant that her brain tissue be sent to the data
bank in Munich, for which all doctors and researchers are very grateful.