A one in 100,000 chance led to Levi being diagnosed with Krabbe disease ” the unforeseen result of both parents having the same rare genetic mutation.
Now his parents need the numbers in their favour as they ask the community to come together to help raise awareness of the disease and funds for Levi.
Levi needs to go to Pittsburgh in the US to undergo three days of testing to determine if he is eligible for treatment.
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READ NOWBut the testing is not covered by health insurance and is set to cost the family $10,000, not including flights or accommodation.
If Levi is eligible for the treatment, he will need to stay in America for a least a month and the costs of the treatment is yet to be determined.
Krabbe disease affects the myelin sheath of the nervous system and children born with the disease may have symptoms of fevers, limb stiffness, seizures, feeding difficulties, vomiting and slowing of mental and motor development.
A fundraiser for Levi will be held at Cyril Road Hall in High Wycombe on Sunday, July 6.
Entry is a gold-coin donation and a variety of stalls will also provide proceeds towards Levi’s testing and possible treatment.
Contact Bianca on 0426 267 971 for more information or if you can help.