Rafaella Anjos

What did it feel like finding out your child has Multiple Sulfates Deficiency (MSD)?

When we discovered that our daughter had this syndrome, my floor fell. It was really bad, I cried a lot.

How has MSD affected your children?

MSD affected her movements, speech, and breathing, and gave her hydrocephalus, and vision.

How has MSD affected your entire family?

In my house, the routine has completely changed, my time is just to take care of her. My husband also helps a lot. Regarding my family, they were very shocked and sad.

What is the hardest part about being an MSD family?

For us, the hardest part of having an MSD child is seeing her little by little, knowing that she no longer sees us, and not hearing her voice calling mom, dad, or her sisters. Is very difficult. We try to find joy in the smallest details. I miss her so much.

What are the biggest misconceptions people have about being an MSD parent?

People’s biggest mistake is not knowing anything about the disease and looking at it with contempt.

What is one thing you would tell people about MSD?

We try to make ourselves happy and show people how important now is… it’s about enjoying the good times and forgetting the hassles of everyday life. Be happy, enjoy your children as much as you can.

What is one thing you would ask from the world?

I would ask the world why this disease exists.

Why are you asking for donations to the foundation?

I would ask people to help financially to find a cure for our children because it is very sad to see our treasures with this disease and not have a cure for them.

Latest News?

My daughter is having difficulty gaining weight and drinking large amounts of fluids in normal ways, and she has also had recurrent sinus attacks. And every time she has a sinus crisis she needs to go on oxygen. And she has had a lot of spasticity, which has been affecting her a lot. Very soft neck, a soft chest, and very stiff legs.