In Memory of Jacquie

This web page is in memory and dedication to my daughter, Jacquie, who was diagnosed with Porphyria in November of 1996, when she had an attack causing lack of mobility and sending her to the hospital. After ruling out other diseases, one of her doctors started testing for very rare diseases, one being that of Porphyria and the test results came back positive. We, having never heard of this disease, started looking for information on it (which was very hard to find).

I was contacted one day by a lady in Scotland, who I found as we were chatting online, had a dear friend who also has Porphyria. They began sending information to us and the more we learned about it, the scarier it became and the more information we wanted to get. This special lady in Scotland has became very dear to me and my family as she has always been there for us with support both online, through snail mail and phone calls.

Starting hematin treatments, of which the first one, left my daughter feeling good for only a few days, we hoped that since her symptoms were so severe, with other treatments she would start to gain more strength with longer good periods of time. The second treatment gave her a period of a week good time and the third a good two weeks. With the fourth treatment, she had a broviac and while putting it in, a nerve was damaged causing her a lot of pain and vomiting for several days. We all built up hope that she would reach a good remission. Unfortunately, with her fifth and last treatment, the doctors changed the treatment, doubling the dosage and giving it every 24 hours instead of every 12 hours and neglected to check her glucose levels. Jacquie went into an insulin coma and died during this hospital stay. This all happened so suddenly and fast, needless to say, we were all in shock at the loss of our precious baby daughter, at the age of 31 years of age.

She left behind two wonderful children, a daughter, Niki, 14 years of age and Matti, 12 years of age (whom Jacquie had fought so hard to save since his birth).

I wanted to make a web page in memory and dedication to Jacquie and share some of the poems she wrote during the long struggle she had with Matthew. Also, I wanted to give web links leading to information on this terrible disease, Porphyria. However, since Jacquie's passing, I've found such a site with wonderful links to others having Porphyria and medical information about this disease. I have met from these pages, a wonderful lady who has Porphyria herself, and she has offered to build my web page, as I know not how to begin such a task. I want to personally say, "Thank you, Cheryl a.k.a. Wipeout for being so willing to help a Mother who misses her daughter immensely, even though you, yourself are suffering from Porphyria". May God bless you always". "Words cannot express my appreciation".

My grandson, Matthew Daniel-Glover Cox, was born six weeks early when we thought his mother, Jacquie, was having labor and was taken to the hospital. When the pains quit in the wee hours of the next morning, the doctors knowing the baby was big enough, induced the pains once more, resulting in the birth of Matti, weighing in at over 5 pounds.The next Friday, Jacquie was in the hospital again with a kidney stone, the initial cause of the pains, we thought to be labor pains.

Immediately after Matti's birth, trouble was recognized, as he was having trouble breathing, and the muscles in his neck were drawing his head backwards. He was immediately put on a ventilator, where he was kept on too high of pressure for too long a time, doing extensive damage to his lungs and his reflux nerve. He was transferred to another hospital that knew more about his problems, where he spent the biggest part of his first year of life, coming home for only very short periods of time. We lost count of the times he coded blue and was brought back, his mother at his side all of the time, except to come home to take baths and get new changes of clothes. She learned everything about his problems and earned the respect of the doctors who tended to Matti during this time.

The doctors wanted to put Matti into a wheelchair, saying he would never walk, but Jacquie's opinion was that if he were put in a wheelchair, he would never have the chance to see if he could walk, so she refused and worked with him until he did walk.

With the damage to his reflux muscle, and being fed through a G-tube since birth: as he was introduced to solid food, he would gag from it being in his mouth, making eating a very difficult and trying experience for him and he had to have enough calories to sustain his weight and grow. From all the needles and poking he went through the first year of his little life, Matti grew to expect pain with the human touch and would draw away from even the loving touch of his parents and grandparents. I've only mentioned some of the problems Matti has had to endure.

Time passed and Matti started getting better, Jacquie was able to be away from him a little more, and she went to nursing school and became a hospice nurse (and a very good one, if I may say so). She worked at this until she was taken ill and became too sick to work anymore. One of my proudest moments was at her graduation from nursing school, and having her instructor tell me that my daughter had the potential to become a doctor and she hoped she would pursue it. (Something that never was to be).

Jacquie loved to write words and music to songs and did that in her spare time, along with a special friend of hers named Benny. I have included a few of the poems that Jacquie wrote, one that her daughter wrote, and the song that Benny wrote the night Jacquie passed away, and sang at her funeral. I'm sure you will feel the pain that Jacquie, Niki and Matti and all who knew and loved her went through, as you read these poems.

My daughter is no longer here with us, but her memory will never fade from our hearts. She was not only my baby daughter: she was my best friend, my confidante, and my oft times medical advisor.

Jacquie, we love you and miss you so!

Matti even with all the pain he has endured in his short life, has grown into a very loving and sweet young man, because of the love of his mother, my daughter, Jacquie.

Jacquie and Debbie

Debbie, a very close and dear friend of Jacquie's, who stayed with her constantly after she became sick, cared for Jacquie and helped in the care of Niki and Matti. Debbie has become a very important person in our family. Not only did she give so much of herself during Jacquie's illness, but has continued to stay on and is helping the children's father, Bret, to care for them.

Words can't express my thanks and love for Debbie and for the sacrifices she made and continues to make for my grandchildren. The love she has shown for Jacquie, Niki, and Matti is something that comes from a very special and wonderful lady. Thank you Debbie, I love you.....may God richly bless you.

This page is � Copyright 1997-1998 by Mary