Developer Ecove and builder Parkview along with construction workers on
the Australia Towers site at Sydney Olympic Park are helping to raise
much-needed research funds for the HCU charity.
Homocystinuria or HCU is an often undiagnosed genetic disease where the
body lacks the enzyme used to process an essential amino acid from food
containing protein. When left untreated, toxic levels of homocysteine and, in
some cases, methionine, build up in the body, causing serious health problems,
leading to permanent intellectual disability, developmental delay, premature
stroke and heart attack, psychiatric disturbances, seizures, lens dislocation
of the eye, and skeletal abnormalities.
Developer Ecove and builder Parkview decided to support the HCU charity
after learning that two local boys suffered from the rare condition.
Six-year-old Connor Morrison and his two-year-old brother Lincoln were
eventually diagnosed with the disease last year following a long period of
escalating symptoms and failed medical testing.
Although all babies are tested for HCU in the ‘heel prick’ test, current
testing methods are unable to detect all cases. In the case of the Morrison
brothers, the condition was not detected at birth; in fact Connor was five
years old by the time he was eventually diagnosed with the disease, at which
point the damage was irreparable.
Connor’s delayed diagnosis has caused learning, language and growth
disabilities that he will have for life.
According to Mrs Tara Morrison, there is very little awareness or
understanding of the disease, due to which families don’t get the required
support. This lack of support and inadequate testing led Tara and her husband
Ryan to start a charity and patient support group called HCU Network
Australia.
Mrs Morrison explains that most people with the disease are unable to
eat meat, dairy, bread or fish, and require to be monitored throughout.
HCU Network Australia aims to bring patients and parents together, raise
awareness of the disease and diagnosis, and offer practical support to
sufferers and their families. The fundraising aims to support research that
will assist in developing appropriate testing, and help families with diet suggestions,
recipes and practitioner support networks.
HCU Network Australia is currently taking part in the Dick Smith
Foundation $1 Million to Charity promotion. The campaign involves buying a Dick
Smith product from a Coles or Woolworths supermarket, and photographing it with
up to ten people. By emailing the photo to [email protected] and
adding HCU in the subject line, points will be awarded to the charity. If HCU
is in the top ten charities at the end of December it will receive a donation
from the Dick Smith Foundation.
Australia Towers developer Ecove was eager to support the campaign to
help sick kids within their community. Michael Azar, Project Director from
Ecove hopes that the company’s involvement will make a difference for HCU.
Following Ecove’s involvement, builders Parkview alerted their 400
workers on the Australia Towers site and photos are now flooding in
before the December 31 deadline when the Dick Smith Foundation will
award winners their share of the $1 million fund.