Patients, caregivers, and advocates alike all know how devastating and exhausting a rare disease can be, so it’s important to find the moments to celebrate when someone overcomes the odds their rare condition presents.
Case in point Will Woleben, whose doctors gave him two years to live upon his Leigh syndrome diagnosis. However, he has defied the odds and is now seven years old!
Will you help him overcome the next set of odds? Read below!
What is Leigh Syndrome?
Leigh syndrome is a severe neurological disorder that usually becomes apparent in the first year of life. This condition is characterized by progressive loss of mental and movement abilities (psychomotor regression). It typically limits a child’s life to two to three years, usually due to respiratory failure.
In most children, the first noticeable sign is the loss of previously acquired motor skills, including loss of head control and poor sucking. Other symptoms include:
- Loss of appetite
- Recurrent vomiting
- Continuous crying
- Seizure activity
- Delays in reaching developmental milestones
Affected infants may fail to grow and gain weight at the expected rate, which is referred to as failure to thrive.
One Day for Will
To protect Will, his parents put up a sign outside his room asking visitors to cover their shoes and wash their hands; Leigh syndrome can be so unforgiving that even the common cold could land him in the hospital.
But although he isn’t able to speak or eat on his own, Will’s life is full of fun. He has learned to play hockey!
“It makes you realize how short life is, and how to cherish all the moments, the small moments, bc you never know when you’re going to lose him,” said Kasey, Will’s mother.
This past year, UT Southwestern Medical Center began building a premier gene therapy lab in Texas, not too far from where Will and his family lives, where researchers have pioneered a new technique via spinal tap. UT Southwestern hopes to lead an FDA-approved human trial for this experimental treatment within two years, just shy of Will’s ninth birthday.
Of course, the research is costly – but Will has already overcome some incredible odds, so he and his family are ready for the next mountain to climb.
And please consider donating! Every bit helps!