My Newborn Has Deadly ‘Childhood Alzheimer’s’ and We’re Racing Against the Clock
My husband and I always dreamed of having a baby. We got pregnant quickly and had a perfect pregnancy. As the due date approached, we were so excited. The nursery was finished and all we needed was our perfect baby. This was the first baby on either side of the family so she was already spoiled.
On March 31, Sadie, who was less than a month old, underwent brain surgery for the first time to correct this. We thought this would be the end of our troubles. However, the doctors would fix one issue then only to find another. Sadie wasn’t eating well and her heart rate was also concerning. I spent my first Mother’s Day in the hospital and I had never been more proud. Our 2-month-old baby girl was so brave and strong.
Sadie had Sanfilippo syndrome, a devastating fatal disease with no cure. Our sweet girl would suffer for years before ultimately dying in her mid-teens. The following weeks were the darkest of our lives. We questioned why God would allow an innocent baby to suffer so much. It was the worst feeling in the world to be told you child is dying and there is nothing you can do but slowly watch it happen. We saw all our hopes and dreams for our little girl vanish.
Luckily, around the same time, a little girl named Eliza O’Neill had just become the first child to be treated in a revolutionary new gene therapy trial. We also found out about a few other clinical trials starting in the near future. Unfortunately, as is common in all clinical trials, there are limited spots in the trial. We knew we had to get to work to allow more children into trials and fund other promising treatment options.
While we were focused on raising funding to get more clinical trials started, we were also focused on getting Sadie up-to-speed.Being in the hospital for the first 73 days of her life as well as all her complications and surgeries made it hard to catch up and be on the same level as other kids her age. But she has been a fighter from day 1 and managed to catch up. She has weekly home visits with an occupational therapist, physical therapist, and speech therapist.
We feel very helpless at times and don’t understand why this is happening to our sweet Sadie or any other child. All we can do is have faith and continue to raise awareness and funding for a cure.
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