Charlotte, who has LGMD2C, a rare and severe form of muscular dystrophy, recently experienced a moment she’ll never forget.

Her parents, knowing how much Howie, the mobility assistance puppy, would mean to her, planned a special surprise. Although Charlotte was aware that Howie would join their family to be trained as her assistance dog, she didn’t know exactly when the big day would arrive.

When the moment finally came, Charlotte’s reaction was priceless. The joy and excitement she radiated captured the deep bond forming between her and Howie.

Charlotte has LGMD2C which is a rare and sever type of muscular dystrophy. We got her a puppy to train as a mobility assistance dog. She knew Howie was coming, she didn’t know when, and we wanted to surprise her.

Right now, we are desperately hoping for a clinical trial. The science is there - gene therapy has been delivered to several other patient groups that are very similar to hers - and it works. But, the money is not. It’s the only thing in the way of save hers, and many others’ lives who live with muscular dystrophy.

All we want for our children is to have control over their won destinies. We share pieces of our live with Charlotte so that they can see the remarkable child we are raising and learn about the disease that is limiting her future.

We know that, together, we can change the future for kids with rare diseases - even if we save Charlotte - we won’t stop advocating for kids whose childhoods are irrevocably changed by disease.

And by the way, Howie is now 4. He’s still her best friend and he sleeps on the side of her bed to make sure she doesn’t fall out, walks beside her so she doesn’t fall, and is the proud recipient of the endless treats she sneaks him.