Happy Mom’s Day

This Mother’s Day is bittersweet for me. I’m so glad that I will be able to spend it with my hubby and my three children. Hannah is still stable, thank goodness. We will be adding more therapies into her routine due to developmental delays, but she is still a very happy and smiling baby!

But I reflect on this holiday, and I can’t help but wonder what next Mother’s Day is going to be like. Will Hannah even be here with us? Will she still be stable? Will her condition progressively deteriorate?

As a mom, our “job” is to prepare our children for the future. I do that with Ethan and Abby. I admit that I don’t do that with Hannah, as I don’t think my heart will allow it. With Hannah, I just love her as much as I can and give her all the cuddles, snuggles, and kisses I can. The same rules just don’t apply when you are faced with losing your child to a horribly debilitating disease like neuronopathic Gaucher’s disease.

But I am now finding that I am not alone fighting this disease, as I have found 10 other families with children still fighting this disease as well as a number of families who have lost their children to this disease, including little Josephine who passed away a couple of months ago at the age of 9 months old with Gaucher’s type 2.

Hannah is 9 months old…

You can meet some of the other families with children fighting this disease by clicking the GD23 link at on the top bar.  Their stories are so important. Hannah is not alone. I am asking your help to continue to fight for Hannah, but also to join the fight for the other children.  Fight so that other moms can have their child home with them next Mother’s day and not worry about losing them.

Please help my daughter live. Please help the other children with Gaucher’s type 2 and 3 live.   Please help me fight to keep Hannah here and as healthy as possible for my  next Mother’s day.