Her Story About Living With MPS1

Sydnee Jensen was born on 3-25-99. Sydnee seemed to develop on the typical baby schedule but everyone used to joke about how loud she snored - “loud as a sailor”. Around 6 months she started having constant ear infections and a runny nose. She had ear tubes put in at age 1. Sydnee’s pediatrician referred her to a geneticist at Texas Children’s Hospital in Houston who diagnosed her with MPS1 at 15 months of age. Her parents were then told Sydnee wouldn’t live past the age of 12! They were devastated!


After many phone calls and meetings with doctors her parents decided her best option was a bone marrow transplant (BMT) at Cook Children’s Hospital in Ft. Worth. Sydnee’s BMT was performed when she was just 19 months old. The transplant process went well. She had the typical problems associated with a BMT - hair loss and mouth sores from the chemotherapy, graft vs. host disease and others, but her family was prepared for the worst. She was in the hospital for about 30 days and then she and her parents were allowed to live in nearby Ronald McDonald house until just before Christmas 2000.

Everything seemed to be going well until June of 2001 when Sydnee started to get high fevers with vomiting. Doctors at Cook Children’s discovered that she had developed Epstein-Barr virus in her lymph nodes and spleen. After 30 days she was released and sent back home to Houston.

However, approximately one month later those same symptoms began again and Sydnee was rushed to Texas Children’s Hospital in Houston in an ambulance. The same virus was now in her brain which caused her to have a stroke on her right side. After more time in the hospital, including a brain biopsy and brain surgery and time in the ICU, she was released after undergoing an experimental procedure which used more of her cells from her original bone marrow donor and exposed those cells to the virus. In the lab those cells developed anti-bodies against the virus and then the cells were injected back into Sydnee.

In kindergarten Sydnee was held back a year and while she is developmentally behind, she is now thriving and turning into your typical teenage girl. Sydnee just recently began Junior High as a 6th grader and she is now 12 years old. She participates in several general education classes with help from an aide in addition to classes in a more specialized setting. Sydnee is just getting used to the regimen associated with Junior High but she seems to love it and wants to do more things independently lately which make her parents very proud.

If you just look at Sydnee you probably wouldn’t think there is anything wrong with her until you watch her unusual gait as she walks. As with so many MPS1 kids, she has had lots of orthopedic surgeries in the last 5 years - carpal tunnel surgery on both hands, pins in both ankles, plates in both knees, a tendon lengthening and hip surgery on both hips. She has also needed physical, occupational and speech therapy to help in her development.

Sydnee is one of the most loving and forgiving children you will ever come across. She loves to sing, listed to music, swim, watch TV and spend time with her family. Right now she loves horseback riding (Hippo Therapy - therapy on horseback) and Justin Bieber!

Her parents just thank God every day for bringing her into their lives! If you could just meet her and see the spirit that she has within her you would be amazed! All of these kids are such an inspiration and we are blessed to have them in our lives for as long as we can.