Metachromatic Leukodystrophy (MLD)

It's been so long ! And there's no way I can cover the past 6 months. So here's a brief update of what's been going on.

First and most important.  Laura is in good spirits and has a wonderful perspective on life. Most of the time. 


However, every few days she will repeat "i hate this disease"  What's a parent to do?  We acknowledge it and offer reassurance that we are dedicated to taking care of her and doing whatever we can to help.  And that's what we do.

In the past month, there has been an unfortunate, and expected, progression in her disease.  So added to the senses and functions she's already lost, add can no longer drink (swallow) fluids and is legally blind.

So we push on.  We've modified her bedroom, again, so we can respond to her health needs.  This includes a sleeper chair so we can spend the night next to her when she's sick.  And IV bags for Gtube feeding and hydration.

Meanwhile, we continue to engage Laura in social functions and have weekly trips to Kennedy Krieger where she can actually walk on her own using a mechanically assistance device we all call "The GEO".

And now that it's warmer outside, we make it a point to have her on the back deck with us to enjoy sun and nature.