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Zach ParnabyChild with Krabbe leukodystrophy
Country:
 Great Britain |
Content:
A Biography of Zak Parnaby
Zak Parnaby was born a healthy boy, ready to explore the wonderful world around him. However, at the age of one, his bright future was threatened when doctors discovered a horrific genetic disease in the young boy. Zak's parents, Lindsay and Ben, received devastating news about their son's rare condition, known as Krabbe leukodystrophy, shortly after the Christmas holidays. This disease affects one in every 100,000 individuals and gradually leads to Zak losing his ability to walk, talk, see, and hear. Doctors warned Zak's parents that he was unlikely to live past his fourth birthday.
A Family's Wishes
Driven by their son's diagnosis, Lindsay and Ben vowed to raise awareness about the disease and created a bucket list of wishes to fulfill for their 20-month-old Zak while he is still with them. Zak has already met his favorite cartoon character, Fireman Sam, and rode on a train named Thomas. He has enjoyed a boat ride, received a puppy as a gift, and had the opportunity to interact with members of the football team 'Newcastle United'.
Living in Spennymoor, County Durham, Zak's parents are determined to check off every item on the list. Zak's future holds experiences such as swimming in the sea, feeling the incredible sensation of a waterfall, riding a bicycle, and meeting a real bear and Mickey Mouse. Each wish holds a special significance for Zak and his parents, but their ultimate desire is for a cure to be found for Krabbe leukodystrophy. Lindsay and Ben believe it is crucial for all children to undergo genetic screening at birth.
Lindsay says, "The things we do with Zak are not extraordinary. They are things we would have done anyway as he grew up. But we can't delay, and we have to do it all within a short period while he still understands. We want him to enjoy and be aware of what's happening."
Unfortunately, the progression of Zak's symptoms is rapid. Lindsay continues, "We don't know what the future holds, but we have to take each day as it comes." Doctors have indicated that Zak may survive anywhere from 18 months to four years.
A Family's Journey
The first alarm bell for Lindsay was when she realized in November 2014 that Zak was having difficulty walking. She took him to a therapist, and initially, doctors believed it was just a phase of his development. However, within a month, Zak's condition worsened to the point where he could only crawl. Lindsay brought Zak to Darlington Memorial Hospital four times before doctors finally conducted a magnetic resonance imaging scan. Zak was then placed under observation at the Royal Victoria Infirmary in Newcastle, where specialists confirmed his grave illness. Three weeks later, an accurate diagnosis was made.
Lindsay recalls, "I don't know what was going through my mind when the doctors told us on Christmas Eve. You don't expect something like this to happen to your happy and healthy 17-month-old child at this time of year. If we had known about this condition a little earlier, it wouldn't have made it any easier, but we wouldn't have experienced the shock of thinking everything was fine with Zak."
Lindsay states that prior to the diagnosis, Zak was a completely normal child attending daycare three times a week. She continues, "If we had the opportunity for the screening to detect what he has at birth, we would have had a chance to go for a bone marrow transplant. It could have helped Zak return to a normal life. But now it's too late."
Reflecting on the missed opportunity, Lindsay says, "For 17 months, we thought everything was fine with him. It's just a matter of having a test, like a needle prick on the sole of the foot. I asked why doctors don't do it. They said it's not covered as an expense. Can you somehow include the cost of children's lives?"
Hopes and Dreams
Lindsay created a fundraising page for Zak, where she wrote, "Ben, our family, and I have made an agreement that Zak's life will continue as normal. But we have planned to do a lot in a short amount of time, which is why we created a wish list for our son. We hope that people can support us and help make this plan a reality to the best of their ability."
Currently, there is no known treatment for Krabbe leukodystrophy. However, early diagnosis can provide options for assistance in children. Unfortunately, it is too late to have a significant impact on Zak's situation, but his parents are determined to fight for other children to have better chances at a normal life.
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