This cheeky little Perth boy is about to celebrate his first birthday. He loves Mickey Mouse, music and cuddles with his grandparents.
Levi’s young parents Ashley and Ben Wibberley should be looking forward to a long list of firsts: first steps, first day of school, first bike ride. But as they plan a huge party and zoo trip for Levi’s birthday in September, they know that time is running out.
Levi has Krabbe Disease.
Krabbe Disease, a form of Leukodystrophy, impacts the protective covering around the nerve cells. As the disease progresses, symptoms include fevers, limb stiffness, muscle weakness, feeding difficulties, vomiting, and eventually a loss of vision, hearing and movement.
When Ashley first suspected something was wrong, she was dismissed by doctors as a ‘neurotic, first time mother’. They saw 8 doctors, including 3 trips to ED, before Ashley’s concerns were taken seriously. After further delays and a misdiagnosis came the devastating prognosis. Levi was not expected to live beyond his second birthday.
In some parts of the US, testing for Leukodystrophy is included in the newborn screening program. This is not the case in Australia, where the disease is considered too rare and the testing too costly. However, doing so would lead to an early diagnosis, and treatment via a stem cell transplant. Ashley and Ben believe that this could have prevented Levi from developing the symptoms of the disease, and allow him to lead a normal life.
Hearing of possible treatment in the US, Ben and Ashley flew Levi to Pittsburgh in July. Guarded hope quickly turned to heartbreak: they had missed out on treatment by a short three weeks.
Since returning to Perth, Western Australia, there have been good days, bad days and some that are ‘completely shitty’. Like this week. Levi’s been back in hospital with an infection – what may be ‘just a cold’ for most children can be life threatening for seriously ill children like Levi.
But in the midst of the heartache, Ashley and Ben are buoyed by Levi’s fighting spirit, and the love and support of friends, family and workmates. They want to thank everyone who has donated money, organised fundraisers or sent messages of hope. And they wish to acknowledge the support of Channel Nine News, who have shared Levi’s journey with the wider community.
Two more fundraisers have been organised in the form of online auctions. Proceeds will be used to purchase specially modified equipment to support Levi’s day to day living, as well as medical expenses and other bills, as Ben and Ashley spend as every possible moment with their son.
Incredibly, Ashley and Ben are thinking beyond themselves. As they raise awareness of Krabbe Disease, they are campaigning for changes to newborn screening so that early diagnosis might prevent others from experiencing the same heartache.
How You Can Help
1. Check out the online Auction for Levi this weekend, with a large range of auction items from many generous sponsors. Once on this Facebook page, look in the ‘Photos’ section to view items. Bidding opens Friday 15 August 2014 and closes 8 pm (WST) Sunday 17 August. Think of it as guilt free on-line shopping.
2. If, like Ben, you are into all things cycling, you could own some great memorabilia by bidding in an auction organised by friend and race commentator Matt Poyner. Items include a signed jersey and race numbers from the Tour De France Garmin team, signed Cycling Australia jersey, and an autographed copy of The Anna Meares Story. More details to follow …
3. Read and sign Ashley’s petition to have Leukodystrophy (which includes muscular dystrophy and multiple sclerosis) added to the routine Newborn screening in Australia.
4. And finally, head to Levi’s Leukodystrophy Battle Facebook page and hit like to follow Levi’s journey.