OUR JOURNEYS

Patient story

Sieglinde Wilson

My name is Sieglinde Wilson, caregiver and Mother of Alexander Wilson. He was born with Primary Pulmonary Hypertension! His story started in my womb, nine month pregnant and not going into Labor. Doctors had to induce pregnancy. After four hours he was born and he looked healthy, but early in the morning he was not doing very well.

After some test the nurses told me he didn’t have enough oxygen in his blood, so they put him in an incubator. Later he had to be Medivaced to another Hospital where they could take care of him. His lungs collapsed twice and he contracted infectious pneumonia in the hospital, which almost killed him. My son came close to dying four times.

We had him emergency baptized and he finally got a heart catheter. We were told that he has primary pulmonary hypertension and he needed a lung transplant. They don’t do lung transplants in Germany and we were told that it would be better for him if I would let him die. I swore I would never let my son die or give up for him never I said and if it kills me.

At that time my husband and I were stationed in Germany, so I got to work and called the Pentagon and told them that I’m the wife of an soldier and we have a son in need of an transplant and that we have to get him back to the states so he can survive. I told them that if they let him die I would sue their Pants off. Within two days we had the go-ahead and hired a private Airplane within the medical standards to Medivac him to Philadelphia CHOP so he would get his lung transplant.

He had two double Lung transplants within two month before he was five month old that was in 1998. He is now ten years old and a happy camper. If you didn’t know, you would think he is a healthy ten year old boy. Of course, he is multi-handicapped, but he is alive. I know as a mother and a person how it is but there is a light on the end of the tunnel and the key is never give up hope. This has changed my life and the life of my family but we are closer than ever.

God Bless you all. It’s a difficult journey but with all of us spreading the word we will get closer to a cure.

 

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.