€67,000 For Operations: Rare Genetic Disorder Hits 5-Year-Old Boy As His Sister’s Own Health Complications Back In Malta Require Constant Therapy
This is the heartbreaking story of Luke Pitt, a five-year-old boy who was diagnosed with Neurofibromatosis a few months after he was born, before being further diagnosed with Congenital Pseudarthrosis of the Tibia, which
is a rare complication of NF which only occurs in about one in 250,000 births and is usually only treated through amputation.
Luke’s parents Audrey and John didn’t feel that this was the right option for their practically newborn child, and instead sought out other opinions in both the UK and Germany. When both of these options didn’t work out, they found a doctor in the US who specialised in treating this condition and actually had a 100% success rate in about 60 surgeries. The main problem with this course of treatment, however was the price.
https://www.facebook.com/abetterlifeforluke/videos/1464595070350183/
Despite the extortionate $115,000 price tag, Luke’s extended family and friends tested their generosity and helped his parents get him the best course of treatment possible.
And thanks to the help of the brilliant Dr Paley, Luke’s surgery was a success. After healing, the young boy got much better use of his leg, including climbing, running and swimming, which he had a lot of trouble doing before.
However, just as Luke was starting to get better, the family would have to face another hardship… this time with the boy’s younger sister
While Luke and his family were still in America, his three-year-old sister Chrissy, who was staying with her grandparents in Malta at the time, was diagnosed with a chromosome 8P imbalance, a completely different genetic disorder that affects her motor planning skills and speech.
Her condition requires daily therapy sessions which will hopefully allow her to begin walking and talking independently. These, of course, bring along their own hefty price tag and costs her parents around €12,000 every year.
Over two years after Luke’s surgery, he and his parents must return to America for a further two operations in July and August with Dr Paley that will “remove the interlocking plate and exchange the telescopic rods” that have helped to keep his leg in place while he grew, while also addressing an ankle issue he developed.
However, due to the high medical costs in the US, these surgeries will cost the family a further $75,000… or €67,000.
Given the high amount, the family has set up a temporary voluntary organisation called A Better Life For Luke Association, which they are using to crowdfund his new medical bills. Their organisation has already been donated over €26,000, but, with well over half of the immense amount still to go before they hit their target, they need your help.
For all the information about Luke and Chrissy’s story, as well as all the ways you could donate to the family, you can visit the organisation’s website here.
