Anna Grace Watson

We are the Watson family and our oldest daughter, Anna Grace, lives with Multiple Sulfatase Deficiency (MSD). In the beginning, Anna Grace had a normal delivery that lasted the full term. She developed a large vocabulary and hit every milestone in her early years. At the time, nothing seemed out of the ordinary with her development. Looking back, I recall jotting down in her baby book, ‘Seems a little clumsy.’ However, it wasn’t until Anna Grace was approaching the age of two that we began noticing a deceleration in both her development and vocabulary. Despite expressing our concerns to the pediatrician, they assured us she was perfectly ‘on track’ and showed no signs of worry. Despite observing ongoing issues with Anna Grace’s mobility and speech, we went to get the opinion of a neurologist, and every test conducted came back negative.

It wasn’t until Anna Grace’s 5th birthday that she was diagnosed with MLD (Metachromatic Leukodystrophy). We went to New Orleans to get a second opinion, and they concluded it was MLD. It was heartbreaking to hear that your child has a condition that could eventually take their life. I remember on the way home from the hospital there was a huge rainbow in the sky that reminded us that our faith would support our family and Anna Grace. Determined to treat Anna Grace, we planned a bone marrow transplant at Duke University. Before we left, we received a call from our doctor that they misdiagnosed Anna Grace and that she actually had MSD. It was harder knowing that there was no treatment for MSD, but we felt slightly relieved as we were told that MSD wasn’t as aggressive and it would make her quality of life better.

When Anna Grace was diagnosed with MSD, we received a sheet of paper that had just a little bit of information on MSD and the doctor basically said “Good luck.” After this new MSD diagnosis, we emailed every doctor who was even slightly associated with MSD research. We even had the opportunity to travel to Houston to visit a doctor doing MSD research. We then went to Facebook to find support and information. We created a Facebook group to try and connect with different families impacted by MSD. We now feel so blessed for all that the Foundation has done for MSD. Since Anna Grace’s diagnosis, there is significantly more information for families and ongoing research to one day cure MSD. 

Now, Anna Grace is 17 years old and our family has learned to live in every day. We cannot control the future, and we can’t spend our time looking at the past. Anna Grace does everything that we do—including church every Sunday and cheering on her sister at basketball games. Today, Anna Grace is completely non-verbal, blind, and non-mobile. We are very thankful that she is still able to eat and allow us to have family dinners as her favorite food is fried fish. We love her laughter as she laughs all the time. We are so blessed every single day to have Anna Grace in our lives.