Leon was born January 2022 in Durham and was diagnosed with Pelizaeus-Merzbacher disease in March 2023.

We noticed  at 3/4 months of age Leon developed nystagmus which is a shaking of the eyes and He wasn’t developing like he should have been.At 5/6 months old Leon ended up being took into hospital with significant head lag, developmental delay and weight loss due to not drinking much of his milk. That was when Leon NG tube was fitted and number of tests were done. 

In March 2023 Leon was diagnosed with Pelizaeus Merzbacher disease (PMD). It is a very rare, progressive, and degenerative central nervous system disorder that deteriorates coordination, motor abilities, and cognitive function. The disease is one of a group of disorders known as the leukodystrophies, which affect growth of the myelin sheath—the fatty covering that wraps around and protects nerve fibers in the brain.

PMD is considered rare, which often means there is not much information known about it. This is usually the case because doctors and researchers do not see many people with the disorder, which makes it hard to learn from them through observations or large studies. It is so rare it’s not even on the NHS website! 

Leon can’t sit unaided, crawl or walk and is currently getting physiotherapy through the NHS however, there is only so much they can provide to enable him to move more independently. Therefore we are raising money for Leon to attend private physical therapy so he has a greater chance at reaching his full potential. Private therapies come at a huge cost so no matter how small the donation is we are very grateful! 

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