Lucas and Penelope's MLD Journey

Hello,

We're Michelle and Tim. Parents to two beautiful and loving children, Lucas (9) and Penelope (6).

In July 2022, our world imploded. Lucas was diagnosed with Metachromatic Leukodystrophy (MLD). A very rare and life-altering and life-limiting genetic condition. Crushingly, Lucas isn't eligible for the life-saving treatment as he has declined too much for it to be effective.

This terminal condition is damaging his brain and nervous system, affecting his gross and fine motor skills and cognition. The deterioration will carry on causing muscle wasting and weakness, muscle rigidity, developmental delays, loss of speech, progressive loss of vision leading to blindness, convulsions, impaired swallowing, paralysis, and dementia.

The specialists couldn’t say how long we have left with Lucas, just that we should make the most of our time with him and do as much as we can whilst he is still mobile and strong enough.

We want to make the time we have left with him as happy and memorable as possible and fulfil his dreams. He has many loves, being outside, parks, the seaside, animals, playing lego games on the PS and watching his favourites; Camp Cretaceous, Paddington and Disney films. And cake which is his answer to any meal questions!

Thank you for taking the time to read this and for your support.

Michelle and Tim