Ann

Linda and Bertie, tell us about Eileen.....

I was overjoyed when I gave birth to a baby girl. Eileen was a very normal little baby and I was shocked when she had a 25 minutes long status seizure at seven months of age. Eileen fully recovered and kept on doing ordinary baby things, but she continued having status seizures every few weeks. As time went on the seizures started to change; Eileen would have a few jumps before proceeding into a full seizure, or she would have strange staring spells. Just before Eileen turned one year old, she had a status seizure that only affected half of her body, two weeks later, she had a status seizure that only affected the other half of her body.

As frightened as my husband and I were by the seizures, the scariest thing was that Eileen, who had 'normal' intelligence at one year, deteriorated down to the level of a six month old baby at fifteen months. This was when we learned of Eileen's diagnosis, severe myoclonic epilepsy of infancy (also known as severe polymorphic epilepsy). My husband and I started to research this area and discovered that there was no effective treatment for Eileen's condition, and most individuals with this disorder did not live into adulthood.

Research into this area was very scarce, but it also gave us some hope; Eileen would be able to learn to do some things and although her seizure types would change, the seizures would become less frequent.

Eileen regained her learning ability. She became a proficient crawler once again and she started walking at 19 months. We had started potty training Eileen's sister and Eileen was determined to do whatever her sister was doing. We were overjoyed when Eileen had potty trained herself prior to 2 1/2 years.

Eileen had the kindest and most loving personality that a child could have. She spent most of her life at the mental level of a 2 1/2 year old. Eileen loved going to school (thoroughly enjoyed the bus ride), going swimming, grocery shopping and going for car rides (she would ask for her 'tape'; if we didn't have it playing). Eileen loved to eat; cheese and crackers were her favorite snack and she enjoyed orange juice. She never really developed a sweet tooth, although she loved pop ("Coca-Cola" was her favorite). Eileen had developed an extensive vocabulary and loved talking to everybody. Eileen would chirp "Hello there!" when she met someone, wait a few seconds and then say "Fine". Eileen would give you a great big hug if she thought that you were friendly. Eileen would tell you that she was "Happy" and she would love to play with her toys, games and dolls. Eileen enjoyed singing, make believe and watching TV game shows. She cheered when somebody won a car on "The Price is Right". Eileen would pick up the telephone if we watched "Who Wants to be a Millionaire"; we would ask who she wanted to talk to, and Eileen would say "Regis". She became so excited when a contestant would call an "E" on "The Wheel of Fortune" that she would rush over to the TV, point to the TV and say "Eileen". She was filled with the joy of living life to it's fullest. Everyday with Eileen was a joyful event.

We spent Eileen's days enjoying her thoroughly, but we knew that her time with us was limited. We were determined to give Eileen the best quality of life. We made the decision to donate Eileen's brain tissue about two years before she died. I had noticed an article in a magazine and knew that it was something that we had to do. Every human being will die; accepting death is easier if you know that your life has some purpose or meaning. We made the decision that I am sure Eileen would have made if she had been able. We knew that she felt awful after a seizure. Eileen accepted her doctor's visits, therapy sessions, hospitalizations and medication without complaint. Eileen loved people so much that she would not want another person to go through what she did.

The big seizure came late on a Friday night. Eileen seized for about five minutes, paused for a few seconds to gasp for air, then continued to seizure. Her little body was turning blue. Eileen was rushed to the emergency department. Eileen died several days later, despite the best efforts of everyone involved. Eileen's death has been a huge loss in our lives. The thought that there is a little bit of Eileen out in the world, ready to help people, is very comforting. We did not expect Eileen to die so soon; but I am glad that we had prepared in advance for the tissue donation, as this allowed the medical team to collect the tissue properly so that the tissue could give the greatest benefit. Nothing can properly prepare a person for the death of their own child, but thinking about it in advance takes many of the 'should haves' away. We have no regrets for the life we had with Eileen. She is now our little angel, working hard to make people happy.


Linda and Bertie, tell us about Eileen.....
I was overjoyed when I gave birth to a baby girl. Eileen was a very normal little baby and I was shocked when she had a 25 minutes long status seizure at seven months of age. Eileen fully recovered and kept on doing ordinary baby things, but she continued having status seizures every few weeks. As time went on the seizures started to change; Eileen would have a few jumps before proceeding into a full seizure, or she would have strange staring spells. Just before Eileen turned one year old, she had a status seizure that only affected half of her body, two weeks later, she had a status seizure that only affected the other half of her body. As frightened as my husband and I were by the seizures, the scariest thing was that Eileen, who had 'normal' intelligence at one year, deteriorated down to the level of a six month old baby at fifteen months. This was when we learned of Eileen's diagnosis, severe myoclonic epilepsy of infancy (also known as severe polymorphic epilepsy). My husband and I started to research this area and discovered that there was no effective treatment for Eileen's condition, and most individuals with this disorder did not live into adulthood. Research into this area was very scarce, but it also gave us some hope; Eileen would be able to learn to do some things and although her seizure types would change, the seizures would become less frequent. Eileen regained her learning ability. She became a proficient crawler once again and she started walking at 19 months. We had started potty training Eileen's sister and Eileen was determined to do whatever her sister was doing. We were overjoyed when Eileen had potty trained herself prior to 2 1/2 years. Eileen had the kindest and most loving personality that a child could have. She spent most of her life at the mental level of a 2 1/2 year old. Eileen loved going to school (thoroughly enjoyed the bus ride), going swimming, grocery shopping and going for car rides (she would ask for her 'tape'; if we didn't have it playing). Eileen loved to eat; cheese and crackers were her favorite snack and she enjoyed orange juice. She never really developed a sweet tooth, although she loved pop ("Coca-Cola" was her favorite). Eileen had developed an extensive vocabulary and loved talking to everybody. Eileen would chirp "Hello there!" when she met someone, wait a few seconds and then say "Fine". Eileen would give you a great big hug if she thought that you were friendly. Eileen would tell you that she was "Happy" and she would love to play with her toys, games and dolls. Eileen enjoyed singing, make believe and watching TV game shows. She cheered when somebody won a car on "The Price is Right". Eileen would pick up the telephone if we watched "Who Wants to be a Millionaire"; we would ask who she wanted to talk to, and Eileen would say "Regis". She became so excited when a contestant would call an "E" on "The Wheel of Fortune" that she would rush over to the TV, point to the TV and say "Eileen". She was filled with the joy of living life to it's fullest. Everyday with Eileen was a joyful event. We spent Eileen's days enjoying her thoroughly, but we knew that her time with us was limited. We were determined to give Eileen the best quality of life. We made the decision to donate Eileen's brain tissue about two years before she died. I had noticed an article in a magazine and knew that it was something that we had to do. Every human being will die; accepting death is easier if you know that your life has some purpose or meaning. We made the decision that I am sure Eileen would have made if she had been able. We knew that she felt awful after a seizure. Eileen accepted her doctor's visits, therapy sessions, hospitalizations and medication without complaint. Eileen loved people so much that she would not want another person to go through what she did. The big seizure came late on a Friday night. Eileen seized for about five minutes, paused for a few seconds to gasp for air, then continued to seizure. Her little body was turning blue. Eileen was rushed to the emergency department. Eileen died several days later, despite the best efforts of everyone involved. Eileen's death has been a huge loss in our lives. The thought that there is a little bit of Eileen out in the world, ready to help people, is very comforting. We did not expect Eileen to die so soon; but I am glad that we had prepared in advance for the tissue donation, as this allowed the medical team to collect the tissue properly so that the tissue could give the greatest benefit. Nothing can properly prepare a person for the death of their own child, but thinking about it in advance takes many of the 'should haves' away. We have no regrets for the life we had with Eileen. She is now our little angel, working hard to make people happy.