In Memory of
Evelina

March 15 - September 24, 1997

When Evelina was about 5 weeks old we started to worry about why she couldn't hold her head yet. We also started to notice that she didn’t moved as much as other babies her age. We went to the hospital to check her up, and we were shocked when the doctors established that Evelina lost all her reflexes and that they suspected a nerve or muscle disease! It was incomprehensible that Evelina in a few weeks had been transformed from "completely healthy" to totally paralyzed. But the worst information were still left to come...

Evelina had to do EMG (electromyography) and NCS (nerve conduction studies), and after that the doctor told us: She had most likely Spinal Muscular Atrophy (SMA). It means progressive atrophy of all muscles as a consequence of that some cells in the spinal cord dies. But what would this diagnosis mean to Evelina???
"There is no treatment" the doctor said. "Babies who make their debut as early as Evelina will probably not live long enough to experience their first birthday..."

We felt like an abyss had opened before our feet. It couldn't be true! I looked down on Evelina who slept so peacefully in my arms. It was impossible to understand that we had just heard her death sentence. We had started to realize that probably a life with a physical disablement was lying in front of her, but the fact that we were going to loose her was beyond what we ever could have imagined.

You feel like it's impossible to live with such knowledge, but you have to go on anyway. Evelina continued to be happy and felt quite well. She smiled, babbled and charmed all persons around her. She was a very bright and alert baby, and we did all we could to stimulate her and give her the opportunity to take part in as much as possible in this world. We went swimming with her, and she liked it very much. She loved when you talked, sang and played with her. Her arms went a little bit stronger so she could experience the joy in moving a mobile with hanging toys, and she liked to put things in her mouth for examination.

But as the summer went on she became worse. It went harder for her to suck and swallow, and in the middle of July it was impossible for her to eat anymore, so we had to give her milk through a probe in her nose. It was sad to make this step, but simultaneously it was a relief to know that she was getting enough food and she needn't be hungry. We also got a suction machine from the hospital to help Evelina get rid of the mucus in her throat.

As her chest muscles went weaker and weaker Evelina got problems with her breathing, and in the middle of August we had to give her oxygen continuously. We borrowed all the equipment we needed from the hospital, and that made it possible for us to nurse her ourselves at home.

Thanks owing to probe feeding, suction machine and oxygen Evelina was able to feel tolerable good for a further time. The situation was serious but stable.

But one day in the beginning of September we were truly shocked! In the evening Evelina unexpected got an irregular and slow pulse, and suddenly she stopped breathing! We were not prepared to let her go, so I gave her artificial respiration while Magnus called an ambulance. We saved her back to life for that moment. We spent the night at the hospital, but in the morning we left for home, because they told us there was nothing more they could do to help Evelina. Then we wanted Evelina to be home with us, her family, her whole short life.

The 24'th September Evelina didn't wake up in the morning. We understood that the end was getting closer, and after consultation with the hospital we decided to wait for it at home. We called Evelinas grandparents and her aunt, and they came. All us who were closest to Evelina were assembled. We were keeping watch over her, we hold her hands, stroke her gently and told her how much we loved her.

In the evening at 17:40 Evelina died. It was peaceful but a grief beyond belief.