A BABY boy from Mutley faces a desperate wait for a new liver which he needs to survive beyond the next year.
Koby Graf, just six months old, was born with a rare condition, Biliary atresia, which means his liver ducts are blocked and cannot process toxins produced by his body.
“Without the liver transplant he will have 12 months to live,” said his father Perry.
“If a suitable donor doesn’t become available it’s likely that Linh will undergo a major operation to donate part of her liver to Koby, as she’s the healthier out of us both,” the 37-year-old added.
“This is a real worry as it could risk her life and health too.
“He’s always so happy. If you saw everything going on inside you wouldn’t be able to match the patient to the person on the outside – it’s that which keeps us going.”
The pair who met when Perry taught English in Vietnam, are now urging the public to sign up to the NHS organ donor register to help save lives like little Koby’s.
“It’s so important people think about signing up to the register. I think it would be an honour to save someone’s life after you die,” Perry said.
Koby’s condition means even with a successful transplant his life expectancy would be vastly decreased and he might not see through his teenage years.
But Perry said he and his wife treasured the time they had already spent with Koby, who is having to take a cocktail of drugs. Due to his medication needs it is unlikely he will get to know his family in Vietnam with the difficulty of travelling.
Around one in 15,000 babies are born with Biliary atresia and symptoms start with neonatal jaundice, a common phenomenon which leads to the yellowing of the skin and the whites of the eyes. The liver, one of the most complex organs in the body, has no nerve endings meaning for the time being Koby is in no pain.
But the couple said they were now just starting the journey down a long and difficult path stretching out ahead of them.
“We’re aware this is just the beginning. He will start to get more sick and things will be hard for him. There is a good chance he might die before, during or after the operation.”
Perry’s Mutley grandmother, Damaris White, is urging the public to support her on a gruelling sponsored cycle from John O’Groats to Land’s End.
She aims to raise money for King’s Hospital in London, liver specialists who have treated Koby.
The 68-year-old said: “In gratitude for the quality of care he has received so far and in anticipation of further care through his transplant and hopefully beyond, I felt I had to raise funds for King’s in the only way I thought I could – by cycling from John O’Groats to Land’s End.”
Damaris will complete the feat with the help of her daughter, Annabelle, a personal trainer.
She added: “This is a huge challenge for a lady who will never see 60 again and who, much to her personal trainer daughter’s despair, has ‘let herself go!’”
Her eldest daughter, Natasha, will drive along with her in a mobile home in which they’ll sleep over three weeks. To support Damaris click on virginmoneygiving.com/damariswhite.
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Tell Your Loved Ones of Your Decision”
Australia, register at Australian Organ Donor Register
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South Africa, http://www.odf.org.za/
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United Kingdom, register at NHS Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves
Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You.