bullet In 1985 Lynn Gura's son Bruce Robert was born with Edwards syndrome, which is a chromosome abnormality also known as Trisomy 18.  The doctors told Lynn her son would live perhaps a month.  Lynn read a post from The Compassionate Healthcare Network (CHN)  about Ms Winston-Jone's baby who also has Edwards syndrome.  See  Edwards syndrome is a chromosome abnormality also known as Trisomy 18 

Lynn wrote CHN  to tell us why that story touched her adding she hopes Ms. Winston-Jones will read her letter and hopes it will help her as she continues to fight for her son's life.

Here is Lynn's  letter to The Compassionate Healthcare Network (CHN) 

 

MY "LITTLE FIGHTER"  ST. BRUCE 

- LYNN GURA

This message was especially important to me because I had a son, named Bruce Robert, who was born with Trisomy 18.  He would have been 19 years old this November 2nd.  I was 18 when I became pregnant with him and 19 by the time he was born.  I was married to his Daddy, but was divorced near the end of Bruce’s life.  

Bruce was a delightful, wonderful blessing to me.  My husband, at the time, had a hard time accepting Bruce’s afflictions.  I, however, embraced him with his afflictions and was so pleased and honored to be his Mommy.  I knew he wouldn’t be around for long, but wanted to treasure the time I had with him.  

Bruce was only given a month to live by the “specialist” who ran the tests to confirm he had Trisomy 18.  He far surpassed the doctor’s expectations by living to be almost 2 ½ years old.   Praise God!  

Bruce Robert had strawberry blond, soft hair, bright blue eyes, and fair skin.  He enjoyed listening to music and dancing with me. He made typical baby noises and sounds throughout his life which I was thrilled to hear.  He also got several teeth, a little later than usual, but nonetheless they were healthy teeth.

My son, like Ms. Winston-Jones’ son Luke, was a “little fighter."   Even though he easily became sick with colds, flu, bronchitis, and pneumonia (3 times during his life—the final time took his life), he had a strong zest for life.  On good days and periods of good health, he was such a happy little boy.  His laughter and smile melted everyone he came in contact with—especially me, my parents, and family.

I fed Bruce for 11 months through gavages tube feeding and then I had the gastrostomy tube surgically placed which helped him gain weight better.  He grew slowly, however, and at 2 ½ years old, he looked more like 1 ½ years old—size wise.  He was able to learn how to roll around which he enjoyed tremendously and even tried his hardest at crawling (he would get frustrated when he couldn’t move anywhere).  I had him enrolled in physical therapy after he turned one and continued it till a few months before he died.  He was learning how to drink from a sippy cup and eat some baby food near the end of his life.  My hope was that he could eventually get enough nourishment by mouth that he could have the tube taken away permanently.  He also was learning to sit up on his own and hold toys (his fingers were tightly clenched when he was born, but through time and working with them, they relaxed).  He had fun at therapy even though it was work and tired him out (he would take long afternoon naps after his morning workout).  He loved being around people and those who came in contact with him were happy to be with him.  He spread happiness and sunshine around.  I think that is why God made him and why he became my son.

I learned a lot from him—inner strength, courage, endurance, and greater faith.  That is the true happiness of motherhood.  If I had to do it all over again, I would a million times.

I hope you will share this information with Ms. Winston-Jones.  I think it will help her.  Luke’s life is special and should not be taken away from him.  He should live out his short life surrounded by love and care from his Mommy and family.  One day, they will have a saint in heaven to intercede for them.  Just like my precious son, “St. Bruce”.  

I will keep her, Luke, and her family in my prayers.  Thanks so much.

 Lynn Gura   mailto:oakmac@rtl-lifespan.org

Troy , Michigan USA

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