A family in England is working to cross items off their toddler son’s bucket list as he battles a rare, terminal genetic disease that doctors say will soon rob him of his ability to walk, see, hear, and speak.
Zach Parnaby, a 20-month-old boy who was born healthy, was diagnosed with Krabbe Leukodystrophy shortly after Christmas, the Telegraph reported. Doctors predicted the toddler has between 18 months and a few years to live.
Zach’s parents, Lindsey and Ben, both 29, have now created a 16-item bucket list for their son, while they work to raise awareness about his disease through a GoFundMe page.
In addition to finding a cure for Krabbes disease, and making it so that the disease is screened for at birth, Zach’s list includes meeting Mickey Mouse, swimming in the sea, building a snowman, riding a fire engine, meeting Santa, a real bear and a Newcastle football player, having his own dog, and a few others.
The family has crossed off several items on the list, and is chronicling their journey on the fundraising page. Zach has gone on a boat trip, gotten his own pet dog and he took a ride on Thomas the Tank Engine. He also took a picture with a few Newcastle United players.
“The things we are generally doing with Zach aren’t out of the ordinary,” Lindsey told the Telegraph. “They are things we would have done with him anyway whilst he was growing up, but we just have to squeeze it into such a short space of time whilst he is aware. We want him to enjoy it and be aware of what is happening,” she told the news site.
The Parnaby’s first noticed their son was experiencing trouble walking in November but doctors dismissed it as a possible “phase,” the Telegraph reported. By December the Parnaby’s son could only crawl, and they took him to Darlington Memorial Hospital where he had an MRI.
A formal diagnosis would come three weeks later near Christmas after Zach had been transferred to Newcastle’s Royal Victoria Infirmary, according to the report.
“I don’t know what was going through my head when the doctor told us on Christmas Eve. You don’t ever expect to be told this when your son has been happy and healthy for 17 months,” Lindsey told the Telegraph.
“He was such a clever and active baby, going to water babies until he was 14-months-old,” she said. “If we were given the option at birth to be screened and found out he had it, then we would have had the option of a bone marrow transplant which could have given him a normal life. It is too late now,” Lindsey told the Telegraph.
The Parnaby’s claim that the hospital cited medical costs when asked why the heel pin-prick test was not made available to them.
A majority of Krabbe Leukodystrophy cases appear within a patient’s first year of life, causing many to die before reaching age 2. According to the United Krabbe Leukodystophy Foundation, symptoms can include developmental delay, seizures, limb stiffness, vision difficulties, loss of muscular movements and others, occurring with rapid progression.
“Sadly his symptoms have become very rapid. We don’t know what the future looks like, but we have to take each day as it comes. Every little cold could be it, we just don’t know,” Lindsey told the news site.
“We want him to ride a bike,” Lindsey told the Telegraph of her son. “It’s something every child should do, but the practicalities of all the wishes are quite difficult. I don’t know if we can find a bike seat that will work for him,” she said.