The Fight Is Real, Morquio Syndrome
Every Day is another obstacle
What is Morguio Syndrome
- Type A, in which an enzyme called galactosamine-6-sulfatase is missing
- Type B, in which there isn't enough of the enzyme beta-galactosidase
The damage caused by the lack of either of these enzymes affects a child's appearance, organ function and physical abilities. Children may develop:
- A pronounced curvature of the spine (i.e. scoliosis or kyphosis)
- Cloudy cornea of the eyes
- A heart murmur
- Inguinal hernia
- Liver enlargement
- Loss of nerve function below the neck
Sahara Van Orden's Story
Sarah was diagnosed was in April of 2002. Sarah's life started out normal but after about a year her parents started to notice that her chest was oddly shaped. So while they were at their doctors , Ruth asked their doctor about it and he replied" Her body is oddly shaped and she will grow into it. But her family always kept the thought of her oddly shaped body in the back of their minds. On November of 1998 they relocated in Lancaster PA.
On a routine visit to their by Tom Van Orden , pediatrician he found that Sarah had stopped growing totally. He spent a lot of time taking measurements and making calculations and said he was sure that there was something wrong with Sarah. He referred us to DuPont Children’s Hospital in Wilmington DE and directed us that though we would wait 3 months we needed to see Dr. Charles Scott. Many months later Sarah’s diagnosis was confirmed by skin biopsy which the lab technician happily stayed late to get us the results after all we had been through. SInce that day Sarah has had 2 neck fusions, leg straightening, and hip surgery as she had no hip sockets, and a few minor procedures. The worst 2 being the hip spica experience and her second neck fusion ended her with a halo for 4 months. Today she is living healthy and she now whats to be on the show Ellen.
Intresting Facts about Morquio Syndrome
2. . Morquio passed on only if both parents have the defective gene. Morquio syndrome can develop in two forms of Type A and Type B. Type A does not have the enzyme-(it is the substance) galactosamine-6-sulfatase and Type B’s do not breed enough-beta-galactosidase enzyme.