When Jillian and Donald found out they were expecting their little boy, they were completely ecstatic. When their son, Roman, was born, he was utterly perfect. The happiest, most easy-going child with the sweetest smile that could melt any heart. After 8 blissful months of pure joy, their world’s were completely turned upside down when their perfect baby boy was diagnosed with a very rare and often fatal genetic disease called Acid Sphingomyelinase Deficiency (ASMD), also referred to as Niemann-Pick Disease Types A/B. This disease will likely cut his life immensely short, as most children with his diagnosis don’t live past the age of three and there is currently no cure. To make matters more complicated, they found out that they were expecting their little girl just three days before learning of Roman’s diagnosis. They quickly found out that she too had a 25% chance of inheriting the same gene mutations as their son. Their beautiful, curious and bubbly little girl, Stella, was diagnosed shortly after birth and their world’s came crashing down yet again.
After fighting to get their children started on an experimental treatment for well over a year, Roman and Stella finally started receiving bi-weekly infusions at Children’s Hospital for the past two years and are doing somewhat stable health-wise. In fact, Roman just turned four in September!
They have always known they wanted to have three children, but knew that if they were to have a third it would have to be through IVF so they could test the embryos for ASMD. They started the process over a year ago, but had to put things on hold because financially they couldn’t manage it all.
“We were so thrilled to find out we received the grant from Parental Hope to start back on the journey of expanding our family. We see the special bond that Roman and Stella share and so desperately want to give them one more sibling and add that much more love into all their lives. We are so forever grateful that Parental Hope is giving us this opportunity.”